tag:blogger.com,1999:blog-88201780784813036052024-02-07T20:36:21.783-05:00Sal's PalsCOMMITTED
TO FINDING A CURE FOR CYSTIC FIBROSISAnonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.comBlogger69125tag:blogger.com,1999:blog-8820178078481303605.post-22743032077992483952016-04-29T11:01:00.001-04:002016-04-29T11:20:19.768-04:0014 Years...<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnlDLIdDverwfxMDISIOyrCqQM31GJ17cOdHdiMzcG3WfhLHOCBk0m3JfFFduox4okrJbMOYB-fr0r8vEXqjtKQNTWnt05hShLyVnt_07aN6ff-Azai5AmHx1EYBK4o-6daTWyrsJ8bMA/s1600/931426_10200986949533960_272476133_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnlDLIdDverwfxMDISIOyrCqQM31GJ17cOdHdiMzcG3WfhLHOCBk0m3JfFFduox4okrJbMOYB-fr0r8vEXqjtKQNTWnt05hShLyVnt_07aN6ff-Azai5AmHx1EYBK4o-6daTWyrsJ8bMA/s320/931426_10200986949533960_272476133_n.jpg" width="311" /></a></div>
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14 Years…<o:p></o:p></div>
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Where do I begin?<span style="mso-spacerun: yes;"> </span>You
would think after 14 years this would get easier, but to the contrary, each year is harder than the last.<span style="mso-spacerun: yes;"> </span>I’ve spent over 80 hours in by basement this
week. Oh, and its Wednesday! I’m hoping my boss
doesn’t read this because there aren’t enough hours in the week! For those of you that
know me, I hate my basement. It dark, my husband decorated it, and most days it’s Sal’s game room… as
it should be. But this time of the year this is the <i style="mso-bidi-font-style: normal;">auction room.</i> …The Sal’s Pals room. On any given day you will find
several computers down here in “the dungeon,” (as I call it,) along with tubs of items ready for bid. <o:p></o:p></div>
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Over the years I have had multiple people ask me, “How do you find the time to put this event on? How
do you get everything donated? How do you keep doing this year after year?”<span style="mso-spacerun: yes;"> </span>The answer is
pretty simple: I’ve been blessed with a pretty
awesome circle of people around me. I’m not
saying any of this is easy. When you hear the old saying, “It takes a village…” Well,
we have TEN zip codes of people helping us fight CF!<span style="mso-spacerun: yes;"> </span>I guess what I am saying is, in order for this event to take place, we need a vast amount people
from multiple organizations to come together to
make this happen. <o:p></o:p></div>
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Would my life be easier if I just settled on the fact that Sal does above average for a cf
patient? Absolutely! My house is a hot mess, I
haven’t cooked dinner in a week, and I am
slightly snappy these days to say the least. But at the end of the day, my house will work out. The
laundry will get done, and we will eat some fabulous carry out! No one is naked
and starving in the corner at our house! <o:p></o:p></div>
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Through the chaos, I try to remind
myself that we are doing something that goes far
beyond ourselves. So, when I start to
freak out, this is what I have to remember: People’s lives depend on the work we do. Would it be easier
for me to say, “We
are taking break?” The answer is YES…for sure! But who’s life does
that benefit? People are dying from CF every day because the right medication
or treatment did not benefit them in time. How do I tell my son that I quit because
my life is a little disrupted?<span style="mso-spacerun: yes;"> </span>His life is disrupted every day by 40
pills and an hour worth of breathing treatments. <o:p></o:p></div>
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I can’t quit now even though I could come up with a million
reasons to. I hate my basement… but I love my son more! When you start to put little
things in perspective, everything else falls
into place. <o:p></o:p></div>
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My advice… if you are committed
to something bigger than yourself, no matter what that might be, you keep your
vision and you dedicate yourself to whatever that is and you let that be your
guide. For me, my son’s health and well-being is what
I’m committed to. So, I stay dedicated, because I truly believe that the
dollars we can raise for the CFF will give my Sal the years of life he needs. So, dungeon… here I come!<o:p></o:p></div>
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Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-82240850372473408932016-04-18T00:44:00.000-04:002016-04-18T00:44:09.423-04:00Sal's True Pals<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdDTYFwwjlfIdsr3dJYkbN45HtF66LoqB9u-GCruugCBsuLsD9FgW6IFBlEY_WUIad6TG_fpkxGOzl4E1mdwCckPrAhAzH_3neTG8Vk49yqTmXMHG_OFczeJ_9xBXppx60rc9J1AgpNiI/s1600/119.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdDTYFwwjlfIdsr3dJYkbN45HtF66LoqB9u-GCruugCBsuLsD9FgW6IFBlEY_WUIad6TG_fpkxGOzl4E1mdwCckPrAhAzH_3neTG8Vk49yqTmXMHG_OFczeJ_9xBXppx60rc9J1AgpNiI/s320/119.JPG" /></a></div>
Last year we asked a few of Sal's Buddies to speak at the event during the Bid for a Cure. You can imagine how nervous I was to have five young boys ranging from 12 to 15 years speak in front of our crowd of more than 400 guests. When the boys each stood up on stage one by one my nervousness quickly turned into to pure joy. Each young man took the stage with such poise, strength and determination for their friend. These young men captured the true spirit of friendship and taught all of us in the room that at any age you can make a difference. Below you will find two of the speeches from that night written by the Szenderski brothers.<br />
<br />
Will Szenderski- age 14<br />
<br />
A couple years ago, when I was in the 6th grade our teacher was always giving us writing assignment in class that she liked to call Adventures in Writing. One particular assignment was to write a descriptive essay about someone important to us. It was to be titled “The Person I Admire Most” and this was my essay…<br />
<br />
My best friend Sal is a tall kid and is about 5”3, which is a lot taller than me and gives him an advantage in sports. He has blondish brown hair, kind of like mine. He also has big feet and wears a size 10 in basketball shoe.
Sal is a good kid but he can be a little mean and bossy sometimes. That personality can actually come in handy because he is a great leader. He is always the one to lead us when we’re on the basketball court or football field. He is also one of the best players on our basketball and football teams. I love playing sports with him, especially because I usually win☺
Sal also has a disease called Cystic Fibrosis that makes it hard for him to breathe. He doesn’t let that affect him though and that’s what I like about him.
Sal showed his personality during the football season when he could get everyone hyped up before the football games. He showed his confidence when he went to 6th grade camp and they had a dance. Everyone thought it was weird to dance with people but he just looked for the cutest girl and danced with her. That is why I love my friend Sal. He is not afraid to dance with someone and he’s not going to stop playing sports just because he has a disease. He keeps going on with life and that is what I like about him.<br />
<br />
Tom Szenderski-age 15<br />
<br />
I’ve done tons with Sal over the years. We go sledding in the winter, we swim in the summer, I beat him in FIFA soccer and then he beats me on the basketball court. We have spent birthdays together, pulled a few all-nighters, and gone to many football and basketball games; the list goes on and on. We do all these things despite his Cystic Fibrosis. So far Sal’s CF has never gotten in the way of the things we want to do, his CF has become a normal part of our routine when we hang out. There are times when I have to remind him to take his pills and he usually has to do his breathing treatments and his vest before we go somewhere, but we know this is necessary and is what is keeping him healthy.
I am aware that at any point Sal’s CF could get worse and I don’t want that to happen. I don’t want the Cystic Fibrosis to get in the way of Sal’s future or the things we do together. We have had lots of great times and I want to have a lot more. I look forward to the next few years in high school together here at St. Francis, our graduations, our college years and maybe someday standing up in each other’s weddings. To make these things possible we need money for research to find better treatments and medications, or better yet, a cure for Cystic Fibrosis, which is why events like tonight are so important. I love Sal like a brother and I am committed to finding a cure.
Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-46231302058168414742016-04-03T19:25:00.002-04:002016-04-03T19:30:06.711-04:00The Phone Call<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiUpJ-x923l7Mo5iquS6zpAqPWeRFsOxU26W1zBicy8Q0C6ao7U2e-4lp4jr22aQy38paAbJ4WNK_oOmtXnxtC9WhXrseSRWh-Deo2gdsSDzA22_RMV0bYnnbUeNpCJkTLSxnQ0BTc5Fk/s1600/11214325_1110125945683056_8340050223924753461_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiUpJ-x923l7Mo5iquS6zpAqPWeRFsOxU26W1zBicy8Q0C6ao7U2e-4lp4jr22aQy38paAbJ4WNK_oOmtXnxtC9WhXrseSRWh-Deo2gdsSDzA22_RMV0bYnnbUeNpCJkTLSxnQ0BTc5Fk/s320/11214325_1110125945683056_8340050223924753461_n.jpg" width="320" /></a></div>
<br />
<div class="MsoNormal">
It was early August 2001, as I made my routine call to my
mom to check in and see how she and the family were doing. The instant that she
answered the phone I knew there was something wrong. I could hear it in her
words as she said that she just got off the phone with my younger brother
Rick.<span style="mso-spacerun: yes;"> </span>It should have been one of my
brother’s best days because just a few days earlier he became a father.<span style="mso-spacerun: yes;"> </span>My nephew Sal was born on August 4,
2001.<span style="mso-spacerun: yes;"> </span>The news that my mother told me
was that Sal was diagnosed with cystic fibrosis. My heart just ached, I wanted
answers to how this could happen.<span style="mso-spacerun: yes;"> </span>Of
course, you go through all the emotion: shock, upset, anger, and then you just
start praying. Praying for a cure, praying to take the pain away. If you know
my family and my sister in law’s family you probably would guess that we didn’t
just accept the diagnosis and do nothing. We formed Sal’s Pals, a group of
family and friends that are dedicated to finding a cure for Sal and others with
this disease.<span style="mso-spacerun: yes;"> </span>We organized our first
dinner auction. And then another, and another.<span style="mso-spacerun: yes;">
</span>We added casino bus trips, golf outings, wine tastings, and kids’
carnivals. We were on a mission and we weren’t going to stop until we had a
cure.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
And then,<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The phone call … It was early afternoon on February 3, 2014
that I received a call from my sister in law Jenny, Sal’s mom.<span style="mso-spacerun: yes;"> </span>Again, I could hear the sadness in her voice
as she told me that Sal was just diagnosed with Cystic fibrosis – related
diabetes (CFRD). My heart ached again, I wanted to somehow reach through the
phone and hold Jenny as tight as I could. I started asking again how this can happen.<span style="mso-spacerun: yes;"> </span>After all we have been faithfully raising
funds for a cure.<span style="mso-spacerun: yes;"> </span>The emotions were
overwhelming.<span style="mso-spacerun: yes;"> </span>It was like we took
another step back instead of forward.<o:p></o:p></div>
<div class="MsoNormal">
Well you guessed it, we kept on going.<span style="mso-spacerun: yes;"> </span>Reaching out to our co-workers, neighbors,
just about anybody that we knew to help us.<span style="mso-spacerun: yes;">
</span>We knew we couldn’t do this alone. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am writing this blog the day after a meeting with the
Sal’s Pals committee.<span style="mso-spacerun: yes;"> </span>We are only four
weeks from our 14<sup>th</sup> annual dinner auction.<span style="mso-spacerun: yes;"> </span>Although they have created a medicine that treats
the disease in the past few years, we are still not done. We still need to find
the cure so that the next phone call…. “We did it, they have cured cystic
fibrosis.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
With all my love ~ Aunt Vicki<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“You have not lived until you have given to someone who can
never repay you” ~ John Bunyan<o:p></o:p></div>
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<br />Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com1tag:blogger.com,1999:blog-8820178078481303605.post-26704134776486475162016-03-24T19:57:00.000-04:002016-03-24T19:57:18.151-04:00You think I'd leave your side?<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";">Has a song ever came on the radio and it instantly takes you to a
time from your past or remind you of a certain individual? Any time I hear a
Tom Petty song, I instantly think of a former boss. Depeche Mode’s “Personal
Jesus” transports me to an awkward self at the 8th grade dance. And my personal
favorite...I can’t hear “Shout” without thinking of Ricky Wedding.</span><span style="font-family: "Times New Roman"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";">I don’t remember the first time I heard Sade’s, “By Your Side,”
but the first time I really listened to the lyrics was at a Sal’s Pals event several
years ago. I also don’t remember who chose to use this song in the video, but I
do know it wasn’t chosen by mistake. </span><span style="font-family: "Times New Roman"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";">This is the part of the blog where you stop reading and YouTube
the song!</span><span style="font-family: "Times New Roman"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";"><br /></span></div>
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<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";"><a href="https://www.youtube.com/watch?v=C8QJmI_V3j4">https://www.youtube.com/watch?v=C8QJmI_V3j4</a></span></div>
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<br /></div>
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<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";"><br /></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";">How can you listen to that song, and not think of Sal?</span><span style="font-family: "Times New Roman"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";">Sal, </span><span style="font-family: "Times New Roman"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";">Although our visits are not as frequent as they once were….know
this:</span><span style="font-family: "Times New Roman"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";">I am proud of the young man you’ve grown up to be!</span><span style="font-family: "Times New Roman"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";">I can’t wait to see what life brings you! (I secretly hope you
become a teacher so your students can torment you the way you tormented me!)</span><span style="font-family: "Times New Roman"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";">Most importantly, I, along with every one of your “pals,” will
never leave your side. </span><span style="font-family: "Times New Roman"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";">You think I’d leave your side baby? You know me better than that.</span><span style="font-family: "Times New Roman"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";">Until there’s a cure,</span><span style="font-family: "Times New Roman"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: Arial; mso-fareast-font-family: "Times New Roman";">Wit</span><span style="font-family: "Times New Roman"; font-size: 12.0pt; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></div>
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Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com1tag:blogger.com,1999:blog-8820178078481303605.post-66461418245488226472016-03-07T22:31:00.001-05:002016-03-07T22:31:30.123-05:00That Acquaintance...<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I first learned of Sal’s Pals about five years ago from a then acquaintance of mine. In 2011, I attended my first event, a wine tasting at the Pinnacle. At that time, Cystic Fibrosis (CF) was something that I knew very little about, and I was unaware of the exciting progress that was being made toward finding a cure for CF.</span></div>
<b id="docs-internal-guid-bec5800a-4ed0-4358-dff9-955d2b93860c" style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">At the wine tasting, I listened to Jenny Pinardo speak. A local mom around my age, with a son the same age as my daughter Maddie. I was so moved by Jenny and her husband Rick’s story, that I decided I wanted to join the fight to find a cure for Cystic Fibrosis.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Jenny told the story of a beautiful baby born to his proud parents. Little did Rick and Jenny know that they were both carriers of genes that cause Cystic Fibrosis. In 2001, Sal was diagnosed with CF. Faced with the devastating news that their son would require daily breathing treatments, a lengthy regimen of medications, doctor visits, and a life expectancy under the age of 30, Rick and Jenny took action. With the support of friends and family, Sal’s Pals was born. A charity committed to supporting research toward finding a cure so that Sal, and others like him, can have the opportunity to live the long and happy life that they deserve.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">In ten years time, Sal’s Pals has raised over a million dollars and Sal’s Pals is full of hope that a cure is on the horizon. The median life expectancy for a CF patient has risen to close to 40, as a result of medications that are treating the genetic defect of CF and are changing CF patients’ lives, including Sal’s. While the survival rate has improved, the fight must continue.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Sal is now a freshman at St. Francis, plays several sports, and is an inspiration to others with CF. Thanks to warriors like Sal and all those who have contributed to finding a cure for CF, future generations will be able to breathe easier with long lives ahead of them.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The Sal’s Pals annual dinner auction is coming up on April 30 at St. Francis High School. I will be attending, along with that acquaintance of mine, my now husband Chris, and over a hundred other amazing people who support this very worthy cause. If you have never attended a Sal’s Pals or CF event, I strongly encourage you to join us. Not only will you feel inspired, you will likely make new friends, and will feel hopeful knowing that your support is making a real impact, not only on lives today, but on future generations to come.</span></div>
<b style="font-weight: normal;"><br /></b>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Until There’s a Cure,</span></div>
<br />
<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Molly McNamee</span></div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_nYOwwHJGa0_Ms5kGTh1Nq82mqYczsc0l4HaIkrmUYrhyphenhyphenLOQu47xXHZ_fQ_7DfBdwXui7YEC231HFzbPGWMXhYrQv9LPCjQKLux5b-2GH4QWQwgPLV5BgW4l-9umtTZHxVbcILF9aXs0/s1600/IMG_2474.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_nYOwwHJGa0_Ms5kGTh1Nq82mqYczsc0l4HaIkrmUYrhyphenhyphenLOQu47xXHZ_fQ_7DfBdwXui7YEC231HFzbPGWMXhYrQv9LPCjQKLux5b-2GH4QWQwgPLV5BgW4l-9umtTZHxVbcILF9aXs0/s320/IMG_2474.JPG" width="320" /></a></div>
<span style="background-color: transparent; color: black; font-family: "arial"; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div>
Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com6tag:blogger.com,1999:blog-8820178078481303605.post-89249799865805572302016-03-01T22:26:00.001-05:002016-03-01T22:26:10.261-05:00"The days are long but the years are short"<div class="MsoNormal" style="text-indent: .5in;">
I remember reading a quote
somewhere that said, “The days are long but the years are short.” As a busy mom
of four, this quote really resonated with me. This past fall was no exception
as my husband and I sent our oldest off to college, another son started high
school and the baby of the family boarded the bus to Kindergarten.<span style="mso-spacerun: yes;"> </span>To say we were overwhelmed would be an
understatement.<span style="mso-spacerun: yes;"> </span>It truly seems like
yesterday that I was forever stuck in the sleep deprived trenches of
parenthood.<span style="mso-spacerun: yes;"> </span>Those days seemed to have
lasted forever. So how can it be that our life is now so different than the
life we used to know?? Well, That’s how life is. We don’t realize on a daily
basis, but it moves so quickly.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal" style="text-indent: .5in;">
Recently, I went to Jenny and
Rick’s for our first Sal’s Pals meeting of the year.<span style="mso-spacerun: yes;"> </span>It promised to be like so many other meetings
where we tackle obstacles, bounce ideas off each other and brainstorm new
avenues to ensure a successful event.<span style="mso-spacerun: yes;">
</span>However, there was a different feel this time, an uneasiness you could
say.<span style="mso-spacerun: yes;"> </span>There we were, gathered in their
living room planning our 14<sup>th</sup> dinner/auction when Jenny and Rick
asked us to go around the room and state why, we personally, felt like we
should continue on.<span style="mso-spacerun: yes;"> </span>This made me think
back to how I became involved with Sal’s Pals.<o:p></o:p></div>
<div class="MsoNormal" style="text-indent: .5in;">
Jenny and I were and were working
together at St. Lukes Hospital and we were both anticipating the birth of our
second child.<span style="mso-spacerun: yes;"> </span>Each of us was expecting a
boy and dreaming of who they would be and what they would become. <span style="mso-spacerun: yes;"> </span>I delivered, Ryan, a healthy baby boy on March
3<sup>rd</sup> 2001 and was filled with excitement when Sal was born on August
4<sup>th</sup>.<span style="mso-spacerun: yes;"> </span>My excitement was
quickly replaced with confusion and fear when Jenny called to inform me that
Sal was diagnosed with Cystic Fibrosis.<span style="mso-spacerun: yes;">
</span>Having a son just a few months older, really made my heart ache for
Jenny and Rick. I couldn’t comprehend how anyone could move forward after
learning their beautiful baby had an incurable disease.<span style="mso-spacerun: yes;"> </span>I quickly realized that I didn’t know my dear
friend as well as I thought.<o:p></o:p></div>
<div class="MsoNormal" style="text-indent: .5in;">
Jenny and Rick didn’t shake their
fists at God, instead, they made the decision to be a part of finding a cure. <span style="mso-spacerun: yes;"> </span>They built our team, Sal’s Pals, out of a determined
group of family and friends and devoted their lives to educating themselves
about this horrific disease.<span style="mso-spacerun: yes;"> </span>They made
the complicated medical terms their second language that they use them like professionals
to educate the team they’ve built. We may not fully understand what all these
terms mean, but we do fully understand how they affect Sal’s world and Sal IS
their world.<span style="mso-spacerun: yes;"> </span>So they fight. We fight
together. It’s not an easy fight either. Raising money to find a cure for your
child’s disease is not taken lightly. Jenny and Rick and so many members have
made this their full time job, on top of their full time jobs not to mention
the families that they are raising.<span style="mso-spacerun: yes;">
</span>Dinners that feed hundreds of people, wine tastings, golf outings,
casino bus trips, just to name a few, all need planned year after year. The
daunting tasks of collecting donations, organizing volunteers, setting up and
tearing down can really make for long days.<span style="mso-spacerun: yes;">
</span>Days that probably seem to never end.<span style="mso-spacerun: yes;">
</span>I could see it in their eyes, that night of the meeting, all these years
in, that they’re tired.<span style="mso-spacerun: yes;"> </span>Everyone’s
tired. But Jenny and Rick shifted the focus of the meeting to Sal’s future and
our mission statement and we were motivated as a team to continue on clinging to
hope, prayers and miracles. <o:p></o:p></div>
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<span style="font-family: "cambria"; font-size: 12.0pt;">Sal is a handsome, hilarious, smart and witty
young man. He is healthy despite the disease that lingers underneath. He too fights alongside his parents and the
team that is named after him. How can it be that it’s been 14 years??? 14 years
since we learned of Sal’s diagnosis, over a million dollars raised and millions
of laughs and memories that have been shared with our team. A team that is lead
by two warriors who have taught the world what it is to love and to fight. The
future is bright for Sal and the thousands of others with CF because of people
like Jenny and Rick, who patiently and relentlessly give of themselves to find
a cure. Though it can be exhausting, monotonous and at times uninspiring, they
press on. Because, not unlike child rearing, the daunting days quickly reveal
the beautiful years that have been dedicated to a </span><span style="font-family: "cambria";">miracle. </span><!--EndFragment--><br />
<span style="font-family: "cambria";"><br /></span>
<span style="font-family: "cambria";">Until there's a cure,</span><br />
<span style="font-family: "cambria";">Angie O</span><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyVgiy0548CWwvZUMh7eyDpLm2En6Q6eGz_iMbh1R2vYZ9ILDlrdX0-lPhCFjC2rEqtSPIhRnR7pWlODrqqci99LY1jOLafRig8UhNQBkv2DKF8sYW85YNOPviuqdJBmle-WIzUI0M06c/s1600/616593_10200254584905302_1704624386_o-2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyVgiy0548CWwvZUMh7eyDpLm2En6Q6eGz_iMbh1R2vYZ9ILDlrdX0-lPhCFjC2rEqtSPIhRnR7pWlODrqqci99LY1jOLafRig8UhNQBkv2DKF8sYW85YNOPviuqdJBmle-WIzUI0M06c/s320/616593_10200254584905302_1704624386_o-2.jpg" width="259" /></a></div>
<span style="font-family: "cambria";"><br /></span>Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com4tag:blogger.com,1999:blog-8820178078481303605.post-17644858089490417022016-01-25T21:22:00.000-05:002016-01-25T21:22:29.829-05:00Life Long Cure...
This past Saturday I had the pleasure of attending the Metro Detroit/Northwest Ohio CFF Chapter Awards Banquet. Each year we are given a <i>State of the Union</i> if you will, on The Cystic Fibrosis Foundation. For the second time in my life I saw the words, <i>Life Long </i><i>Cure</i> on a slide show presentation and before I could even finish listening to the speaker a flow of tears streamed down my face. Even now, just thinking about those words just gives me chills. Maybe I’m so moved by those words because I don’t dwell about Sal’s future. I find myself dealing with day to day situations and living in the present. I’m sure professionals would call this some sort of defense mechanism and I’m okay with that.
The reality is, a <i>Life Long Cure</i> is in the CF pipeline! When Sal was diagnosed with CF the majority of the medications dealt with the symptoms of the disease. Today the drug discovery and development is accelerating the search for a cure. <i>With the support from the Foundation’s nonprofit drug discovery and development affiliate, Cystic Fibrosis Foundation Therapeutics Inc. (CFFT), scientist and clinicians have expanded our understanding of how different CF mutations cause distinct problems and now are making great progress on many fronts to tackle these challenges. At the same time, the Foundation continues to explore innovative strategies to help people living with CF manage the symptoms of their disease, and it has expanded its clinical trials initiative to speed development of promising new CF therapies and get them swiftly into the hands of those who need them.</i>
14 years ago, when we started on this fundraising journey, Rick and I were adamant that Sal’s survival and quality of life would depend on new medications, new treatments and tackling CF from all angles. The CF Foundation is doing exactly that and Sal’s health has continued to directly benefit from the treatments and advancements in medications that have been available to him. So well, that he just finished up his first year of high school football and is currently running up and down the court on his high school basketball team. (I guess I should say he scores a few baskets too).
Saturday April 30th of 2016 Sal’s Pals will continue to support The Cystic Fibrosis Foundation by hosting our 14th Annual Sal’s Pals Dinner and Auction. I hope all of you will join in our fight by supporting this years event!
Until there's a cure,
Jenny<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYyWLi9dJm8BYQFacmsB2pwyzIDXiFBd9urrlxMRkPg3t-VtU5C331sMKlcRig55leOhiMmmjl2vloqrK3MNHLyowitLzQJD1YVhfALL_xkdDi6umnkUDzW-eqEuDTkflplkAlfI79_VI/s1600/FullSizeRender-7.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYyWLi9dJm8BYQFacmsB2pwyzIDXiFBd9urrlxMRkPg3t-VtU5C331sMKlcRig55leOhiMmmjl2vloqrK3MNHLyowitLzQJD1YVhfALL_xkdDi6umnkUDzW-eqEuDTkflplkAlfI79_VI/s320/FullSizeRender-7.jpg" /></a></div>
Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-26270219732547117952015-09-30T22:19:00.001-04:002015-09-30T22:36:12.930-04:00<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi5fCtiVvecYz8g9-aukMDpbpIfVZl-AbdG0ehftq2A9gy0_4eNzkCL1Q3ilamB58YwlE8GUBOS_utzgI3w8rFDtjY5UIbus6bjSzDRkf0bEOIKaR9AS-govK-UO8sGrwjUfAew_JwOco/s1600/FullSizeRender-7.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi5fCtiVvecYz8g9-aukMDpbpIfVZl-AbdG0ehftq2A9gy0_4eNzkCL1Q3ilamB58YwlE8GUBOS_utzgI3w8rFDtjY5UIbus6bjSzDRkf0bEOIKaR9AS-govK-UO8sGrwjUfAew_JwOco/s320/FullSizeRender-7.jpg" /></a></div>“Basic Defect”…
It’s hard for any of us to admit we may have a flaw let alone a defect. For Rick and I the stars, the sun and the moon aligned so that we may pass our defect onto Sal. Harsh yes it may be but it’s our reality. Quite incredible really, when you stop and think about it. Well, there really wasn’t a cosmic alliance but it sounds good. For us it was just science. Science that for well over a decade we have had to learn to understand. With each passing year the science evolves, as does our understanding.
Here’s the understanding… In July of 2015 Orkambi, a drug aimed at altering the basic defect of cystic fibrosis was approved for use by the FDA. Let me say it again, AIMED at ALTERING the BASIC DEFECT of CF. This means that for Sal his faulty gene because of CF can be corrected. Sal’s body will longer have a medium for bacteria to cause havoc in his body. No longer will he be a prisoner of sinus infections, deadly lung infections, bowel obstructions, and hopefully sodium issues when he is playing sports. For Sal this is life changing. But more importantly, the hope with this drug is, that no more damage will be created in Sal’s body. By correcting the faulty gene we stop the progressive damage. In turn, Sal lives a longer productive life!
When Rick and I decided to make fundraising our passion and past time, I can honestly say that we were always cautiously optimistic that a cure would come for our son but I never thought that it would be now!
Orkambi is not a cure but it is a damn good start! For all of you that have followed us for the last 14 years, this reality is because of your generosity! Your donations, volunteerism and dedication have allowed us the funds to have Orkambi. To Vertex and The Cystic Fibrosis Foundation thank you! Thank you for taking a chance on 30,000 individuals that can breathe easy because of you.
Sal will start his Orkambi in October. We are hoping and praying his course with CF will forever be changed. Thank-you, thank -you, thank-you are the only words that I can come up with right now. Please pray for Sal as he begins this new journey!
Until there’s a cure,
Jenny and Rick
Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-40384876832834636272015-03-24T21:07:00.001-04:002015-03-24T21:07:03.452-04:00Sal's Pals 2014 Million Dollar Celebration<iframe allowfullscreen="" frameborder="0" height="270" src="https://www.youtube.com/embed/3jxFhWj6AMw" width="480"></iframe>Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-63915441756336539862015-03-24T20:28:00.000-04:002015-03-24T21:28:59.589-04:00Volunteer Leadership from an Aunt's View<i>2 Corinthians 2:14 But thanks be to God, who in Christ always leads us in triumphal procession, and through us spreads the fragrance of the knowledge of him everywhere.</i>
I am full of gratitude this morning. This past weekend I had the honor of attending the Cystic Fibrosis Volunteer Leadership Conference in Virginia. I spent two days with people from across the country with one common goal, to CURE CF. The common thread amongst the individuals in the room was not one I would choose for anyone, least not my nephew Sal. I was awed at the amount of passion, knowledge, and gratitude. I simply cannot put into words how grateful I felt that, every, single person at that conference is all in until CF stands for <i>CURED FOREVER<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3g_jt1kx6jdwxN7DIuGulOATPnjInR7bx65VtSkBMatJafMip0Wb5ITbL3-m0xAn3kBEUaKYoEpi_n3yiCZNS9ZMwFeQqTRr6Q3rHRtkdhpC2mH6GS0sMeqYcD404Jy_nHbpf-kRouxE/s1600/FullSizeRender-3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3g_jt1kx6jdwxN7DIuGulOATPnjInR7bx65VtSkBMatJafMip0Wb5ITbL3-m0xAn3kBEUaKYoEpi_n3yiCZNS9ZMwFeQqTRr6Q3rHRtkdhpC2mH6GS0sMeqYcD404Jy_nHbpf-kRouxE/s320/FullSizeRender-3.jpg" /></a></div></i>.
I was most astonished by the panel with our great CF leader, Dr. Bob Beall and his “Dream Team” of doctors. It was like watching an episode of brilliant minds as they described their work and the progress that is being made. Dr. Michael Boyle said that when he left John Hopkins Medicine to become the foundations National therapeutic vice chair and the principal investigator for clinical trials, many people were constantly asking him why he would leave to work for a charity, his response, “Everyone in medicine today knows the CF Story, I want to be a part of defeating this disease! But even more importantly in creating- a full life for patients and their families!
Three years ago when I was attending the same conference the foundation was unveiling the new drug Kalydeco, created to cure the symptoms of CF in individuals with a certain CF mutation, about 4% of people with CF. The room was hopeful. The results have been promising for the select group. Just this year the CFF has over 18 new clinical trials! These trials are aimed at two drugs that are created to treat Sal’s mutation, which includes 87% of those with Cystic Fibrosis. If you have donated, your money is going to this research. THANK YOU!
For the first time in my 13 years of fundraising for Sal and the CFF I am not afraid to think about his future. I am anxious and full of hope! I have a renewed passion for all of those living with CF. I will not stop striding until a cure is found. Through gratitude, perseverance, and commitment I am confident that TOGETHER we will cure this disease.
Thanks to the tremendous progress of the foundation we are getting very close to a cure. Improved therapies and medications make a huge difference to those who suffer with this disease every day. At the conference we were able to talk, via live stream, with adults that are living with CF, each unique and beautiful people striving to live life to the fullest. Somer Love, while spending 100% of her days on oxygen due to decreased lung function and the air pollution in Salt Lake City continues to raise funds through her organization Love to Breathe, www.lovetobreathe.com, and awareness for CF. She befriends and mentors young CF patients throughout the country and lives her life by her personal motto to “Breathe out Love”. Kristin Dunn, recently gave up working full time to focus on her health, she organizes two walk teams and is a National CF Ambassador. We also spoke to the entertaining Andy Lipman who kept the room in tears of laughter and hope with his wit and honesty about his disease. Andy is a dad of two young children, has raised over a million dollars for CF in memory of his late sister Wendy whose life was taken by CF, and works a full time job where he does his daily treatments behind closed doors. While CF is still the number one genetic killer of children in the U.S. and there still is no cure, there are more adults living with CF than ever before due to the science that we are funding! We are close! The recent breakthroughs are life changing for the CF community. However, we are not there yet, there is still work to be done, we are optimistic, but need to continue our fundraising goals to keep up the promising momentum!
So many of you ask me. “What can I do to help”? While I may feel comfortable asking a few of you over and over again for your help which I am beyond grateful for, I know that I have probably turned some offers away or waited for that one job perfect for you as an individual then dropped the ball or sadly got overwhelmed, two busy, or simply felt guilty asking. This year Sal’s Pals has been tasked to increase our fundraising dollars for the CFF by 11%. We cannot do that without the help and support of all of Sal’s Pals and our community. So today I am asking you for your help. There are so many opportunities available that I am going to list them below:
1. Visit www.salspals.com to learn more about Sal and our fight for a cure!
2. Donate! <i>Every dollar counts! It's not how much we give but how much love we put into giving</i>. ― Mother Teresa
3. Join us at our 13th Annual Dinner & Auction, May 16, 2015! If you are already planning to attend, consider inviting some friends that have never been to a Sal’s Pals event and help us spread awareness.
4. Donate to our silent or live auction or our basket raffles: over 500 people will be attending our event. Our auction is always full of items our guests love to bid on. Help us help you, by raising awareness of your business or services. No item is too big or too small!
5. Come walk with us at the Annual Great Strides Walk: Great Strides provides a great opportunity for people within the community to get involved in a great cause. Participants can form walk teams at their workplace, through their clubs and organizations, or with friends and family. Go to http://fightcf.cff.org for more information or to join the Sal’s Pals team!
6. Get a team of golfers together for one of our Sal’s Pals Golf outings, dates and locations can be found at www.salspals.com
7. Purchase tickets to the Annual Uncork A Cure for CF held in the fall and help us toast to a cure! The date will be posted at www.salspals.com Or you can personally email me at salspalswineevent@yahoo.com to learn how you can volunteer at this event.
8. Keep Sal and others with CF in your thoughts and prayers!
I truly believe in the power of numbers…“There are infinite numbers between 0 and 1. There's .1 and .12 and .112 and an infinite collection of others. Of course, there is a bigger infinite set of numbers between 0 and 2, or between 0 and a million. Some infinities are bigger than other infinities... I cannot tell you how grateful I am for our little infinity<i>. You gave me forever within the numbered days, and I'm grateful</i>. -John Green, <i>The Fault in Our Stars</i>
Together we can give Sal and others with CF an infinite number of days!
Until there is a cure!
Aunt Nikki
Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-83030597107391385982014-10-07T21:11:00.002-04:002014-10-07T21:11:37.375-04:00If You Can't Fly...<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXzH22OyJ3prY1_1_ZxTksKqPS6fxp5n4tIRD7XkRKJgQZ7kq9a2tiurBDn4FVRIQySfxbDZFm7Pr-UeNyk81qVNPh_nhl7Qxj5kQlKxoiG_yYDMpBQwqNTi2sLQ9Olgdp73P8W6WNxHo/s1600/photo+3.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXzH22OyJ3prY1_1_ZxTksKqPS6fxp5n4tIRD7XkRKJgQZ7kq9a2tiurBDn4FVRIQySfxbDZFm7Pr-UeNyk81qVNPh_nhl7Qxj5kQlKxoiG_yYDMpBQwqNTi2sLQ9Olgdp73P8W6WNxHo/s320/photo+3.JPG" /></a></div>
I don’t have the faintest idea of what it’s like to be a mother, to look at this beautiful little person you created and know you have full responsibility for that tiny life that’s oh so precious. I do however, know what it’s like to be an aunt. So the thought of being a parent, absolutely terrifies me. Because I love my sisters all so much, naturally I love their little people so intensely that like I’ve said before, I’d give any one of those little monsters my heart John Q style. While I love none of them more than the other, Sal’s a little different, for more than a million reasons and I think any of my siblings would agree. But for me in particular, he’s the only nephew I have, and fortunately, I was able to take care of him quite a bit as a baby because his mother and father worked and I stayed many summer nights to help them out in the morning so that Jenny could get some much needed sleep after working night shifts in the ICU. Needless to say, Sal became my little buddy. We had a routine, he’d wake me up way too early, we’d have breakfast. Then we’d play in the living room and usually outside in the backyard. Then we would have lunch, and sometimes, he would be so tired he would fall asleep in the middle of it! So then we would make our way to the couch and watch some cartoons and there we would fall asleep, this tiny little Sal laying in my arms or on my chest. Gosh he was easy to adore. At that point Sal’s treatments and medicines were much less, and I remember not really knowing what would lie ahead for this beautiful little baby. Prayers for his health, courage, strength, for no suffering, for happiness, for a full life were frequent. They still are. Fast forward to just a couple of months ago and here I was asleep on a couch at my sisters again and Sal waking me up just as early. It was a Monday and Sal had school. But he was up and downstairs before anyone else because Sal has to do all of his treatments several times a day, including before school starts. He got his breathing treatments in and his vest time in all before Giana was downstairs. Then he had his breakfast and took some of the dozens of pills he takes every day all while catching up on the previous week in sports on ESPN. Such a little dude. I thought to myself, this sucks. It’s hard enough being a teenager and getting out of bed (well it was for me) but he has to do all this crap too. EVERYDAY. I struggled just making sure I took my contacts out every night before bed and flossing my teeth at his age. Ok who am I kidding, I struggle with taking even just a couple of vitamins daily as an adult! This kid has to spend at least an extra half hour every morning before school to do these treatments just to stay healthy and breathe. But this is where Sal is different from me. This isn’t just all he knows life to be, he embraces it. He knows it’s important. This is where Sal teaches me to embrace my life too and roll with the punches. This is where he has helped me believe in dancing in the rain instead of waiting for the storm to pass. I like to think, no, I know he is the reason I am the person I am today. I don’t think many people would ever say that a 13 year old boy is their hero or is their inspiration, but he’s mine. A couple of years ago I went to the National Volunteer Conference for the Cystic Fibrosis Foundation, and we met a father of a boy with CF who also decided they weren’t going to just sit by and watch their kid get sick and die, he was going to do something about it! Great guy, super blunt too. He asked who we were and then looked at me and said, well why the hell are you here? You don’t have a kid with CF, it’s just your nephew. He was being sarcastic but the only thing I could think was, I’d give my life for this kid to live, so duh, of course I’m here. I don’t see an option not to be here. I don’t understand why you wouldn’t fight right along with your family and with a kid like Sal. And so I’ve fought in different ways for Sal, by volunteering right alongside family and friends at our events, creating artwork to donate at events, by spreading awareness, recruiting friends to join in on events, by attending events in Columbus where I live, by wearing an orange bracelet everyday as a reminder and by drawing a tattoo, our logo, and placing it on my wrist so I see it every day and remind myself to dance rain or shine. To do good and live my life to it’s fullest. If not for me, then for every person with CF that couldn’t or didn’t get the chance to. I’ve added so many things to my bucket list because of Sal. One was a half marathon and in 2013 I checked it off my list by running the Rock CF Foundation’s event in Michigan. Next on my list was a cycling event. I hadn’t ridden a bike in over a year. Hell, I don’t even own a bike. But a friend of mine had tried to get me to do the Cystic Fibrosis Foundation’s race for years. Well it was finally in Cbus so I couldn’t avoid it anymore. I signed up to do the 40 miler. In my mind it’s good to have goals and something to achieve, and it’s a bonus if you can push yourself. BUT, I’m a baby, I don’t like doing things that are uncomfortable. So maybe it’s weird, maybe it’s not, but doing these races is my way of toughing it out for Sal and fighting for those people who can’t do these things. I make myself uncomfortable because I’m so damn pissed that Sal has this disease. I’m mad every time I see or read someone has died from CF. So I get angry and I push myself and like to think that I’m fighting right along with them. I know it’s not the same and it’s ridiculous to think it’s making a difference, but it makes me feel better I guess and if I can raise awareness and money along the way to get closer to a cure then I’m going to keep on keepin’ on. So here’s where I introduce you to Kevin. Kevin is a friend of a friend who does the CFF Apitalis Race for a Cure in Cincinnati every year but lives in Cbus so I was asked to join his team, To Take a Deep Breath. I am so happy that I did. Kevin has cystic fibrosis, and he’s 54 years old. He’s kind of an awesome guy, and his wife, well she’s just as awesome and just about the kindest person I’ve ever met. Kevin sent me an email asking if I’d like to train with him for the race in October. Of course I would, and I did. Here is part of what he sent me:
“This is my 4th year participating in the CF charity ride. A month before the ride in 2012, I was released from the hospital with a PICC line, so, I was not able to ride. However, my brother rode the 47 mile route for me. Like Sal, I have CF and am a ripe old age of 54. I have been exercising and proving the doctors wrong for the past 30+ years. At 40, I participated in my first triathlon at Caesar Creek state park. I loved it so much, I did 9 of them the following year and am up to 20 something as of 2010. The last 3 years have taken it's toll on me, with 8 hospitalization in 3 years. After my last incarceration, I decided to go on disability and have not seen the inside of a hospital or a PICC line since fall of 2012. My lung functions have increased and overall health improved. Tell Sal that with exercise (especially swimming) and a don't quit attitude he will have a long healthy life”
I rode with them about once a week for a little over a month. They taught me biking etiquette and I learned Kevin’s story over those several weeks. Kevin didn’t find out he had CF until he was 22. And by 35 he had developed a bad pneumonia that wasn’t getting treated properly and eventually had to have part of his lung removed. Prior to this his lung function remained usually in the 90% ranges. It dropped to somewhere in the 50% range after that. But, like Sal, Kevin is a fighter. As you can see in his email, he has that don’t quit attitude like Sal. Over the weeks of riding I started to see that he was a lot like Sal. And it gave me even more hope that Sal will live to be an old man. He is so active and athletic (little dude boasts a 550 batting average, had two hidden ball tricks and 8 home runs this past baseball season and just a couple of weeks ago had 3 touchdowns as running back for his football team!) that it’s going to help him out in the long run just like it has helped Kevin prove his doctors wrong. To quote from before when Jenny told Sal he now had to deal with having cystic fibrosis related diabetes,
“When we told Sal there was no tears, no why me’s. Sal leaned back in his chair, scratched the top of head, looked up at Rick and I and said,
“I got this, just tell me what I have to do”.”
Those 11 words Sal said are so powerful and awesome. How could he not be everyone’s hero? Along one of our longer rides (34 mile training ride) Kevin and I were able to chat a bit more. This was the toughest ride I had had yet as it was in the 80s with high humidity and let’s just say I was really struggling. Let me say that I don’t find it fair for me to complain about it being tough when Kevin’s working with less than half my lung capacity. But Kevin doesn’t make you feel like a jerk for struggling. He and his wife are very supportive and helpful! This particular ride was very hilly and challenging. Kevin said to me “I hate these hills, but they are a reason why I’m here today”. This struck something in me and he’s definitely right. Challenging yourself and pushing yourself helps you stay mentally and physically strong, especially for a person with a chronic disease. It was pretty inspiring to hear him say that but like Sal, he doesn’t let CF run his life or get him down. He embraces it too. About a little more than halfway through our ride we stopped and Kevin and Becky prepared me for what was ahead. Becky explained that we would be going about a mile and into a park area that she loved because it reminded her of the Smoky Mountains. But then we would get to a hill and Kevin interjected to let me know that it was about an 8% grade hill. She told me there was absolutely no shame in getting off my bike and walking it to the top. At this point I feel like I’m going to pass out but I’m trying to be up for the test. And then Kevin said, “but your challenge is to make it all the way to the top”. Well shoot, now I can’t get off the bike, I have to go all the way to the top. So we ride in and it is very pretty in this park and it gets you excited for the hill. Becky zooms up the hill, clearly better prepared and in better shape than me! I threw my bike into first and peddled up the toughest hill I’ve ever had to climb. It was hard, my legs were in serious pain and I thought I might cry. But I looked behind and Kevin was right there with me so I endured through and made it all the way to the top, no giving up. Just like Kevin, just like Sal would have done too. So here’s the deal, race day was miserable, it was with a wind chill in the 30’s, the winds were 18-19 miles an hour and it rained intermittently and at one point we were pelted in the face by a brief hail storm. It kicked all our asses. And we were all better for it. We worked as a team and I was lucky to have two beautiful souls, my friends, Patti & Melinda who joined me in the race because they are crazy. And because they care about fighting CF too. We helped each other make it through and were motivated along the way by volunteers and friends who came out to cheer us on. It was a great day ended in celebration with friends afterwards. I’m so glad I kicked my own butt Saturday, because I got to meet a really great group of people, and another inspiring person with CF that gives me hope for Sal. So those quotes Kevin said, I mentioned they struck something in me. They really reminded me of Sal. So I did some checking a few weeks ago and I found this quote Sal had posted on his Instagram earlier this year. It was a quote from Martin Luther King Jr. and it said, “If you can’t fly, then run, if you can’t run, then walk, if you can’t walk, then crawl, but whatever you do, you have to keep moving forward”. Needless to say this was what I read before my race on Saturday and it’s what motivated me to keep going! I hope that Sal and Kevin inspire you as they do me, and that you challenge yourself to do something bigger than you! And please, keep fighting with Sal’s Pals to find a cure.
<3 Live, Love, Breathe
Maria Jiannuzzi
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Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-33574829052856002852014-09-05T22:13:00.000-04:002014-09-05T22:20:41.068-04:00Uncool, know nothing and old!Well Rick and I are officially uncool; know nothing and aged at 37 and 38 years old! Yep, that’s right Sal is a teenager! This month Sal turned thirteen. At five foot six and one-hundred twenty-two pounds you would never know Sal has cystic fibrosis. Every six weeks when Sal has his CF appointment his favorite part of his visit is the weigh in. I, on the other hand would rather do a dance over hot coals before I would step on a scale even in front of a clinician! I guess maybe that’s why I’m old, as Sal would put it.
One thing I’m slowly learning is that Sal is growing up. I remember once when Sal was 4 years old. I had worked night shift and was beyond exhausted. There Sal sat at the table for breakfast with all of his pills organized out in front of him as he patiently waited for his breakfast. Giana, in her highchair could not wait so patiently. As I sat there trying to feed her cereal and make Sal’s eggs. Giana made a face she had never made before. Usually I could not shovel her breakfast in fast enough but not this time. With each bite she acted as if she had no idea how to eat from a spoon. I started to get a little frustrated with her until Sal so matter of factly pointed out, “Momma does Giana take pills like me now? …And Momma your burning my eggs.” Sure enough, with each bite I was trying to sprinkle Giana’s cereal with pancreatic enzymes. No worries, I am pretty sure she spit them all back out at me. At this point I realized I was not Super Mom and I needed a little help. So Grandma Ginny to the rescue! From then on, my wonderful mother- in- law was always there when I got off of work so I could sleep.
I have always told my husband and my children that if anything would ever happen to me I don’t want them to be naked and starving in the corner! So they need to be able to pick up after themselves do the laundry and cook something if need be. For Sal it has always been a little different because he has added responsibility with his medications and aerosol treatments. With each meal I ask him, “Sal did you”…and before I can even finish the sentence he replies, “Yes Mom, I already took my pills”. Force of habit I guess on my part but I can see he wants to be so grown up. Just like he views Rick and I as old, I can’t help but remember him sitting at that kitchen table with his pills all laid out. Rick and I have tried so hard to make sure he is independent now we just need to trust that he will do the right thing.
Tonight I picked Sal up from a junior high dance. As soon as he got in the car I asked him how it went. Then very slightly I asked, “So did you slow dance with any girls?” Quickly Sal responded, “Heck NO! Sister Cloreen was there with her flashlight and if anyone was dancing to close she told them to leave room for Jesus!” I cracked up laughing all the way home! I think on Monday I will call the school and thank her for the gentle reminder! After all...isn’t that what old people do!
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY370iuRpY0jgQce7g8fLP4HYBVixBNtmyd1rinE64jQpSAvVZeuYKZcQl3jQR7IGo17n7K-4oumLXG_DQJojr9Tiw1_1JEG9xUM58ZvZ50gj4PSc4MDUGfdRVU2jD6tnyrcAYq90wmoQ/s1600/kinder.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY370iuRpY0jgQce7g8fLP4HYBVixBNtmyd1rinE64jQpSAvVZeuYKZcQl3jQR7IGo17n7K-4oumLXG_DQJojr9Tiw1_1JEG9xUM58ZvZ50gj4PSc4MDUGfdRVU2jD6tnyrcAYq90wmoQ/s320/kinder.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw9DzOfLHon-Y4t15aVknWHGaDT-YislILb5gxjJ76eUj-mvBLcaBckco5pI5mtJL1B1ZDIew_RWBjHX9n_nOgyY9mvq98-W7v__2u0cXcYraVhFolC5ijoZAqeh6E0Egj-CYWjE7GRps/s1600/now.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw9DzOfLHon-Y4t15aVknWHGaDT-YislILb5gxjJ76eUj-mvBLcaBckco5pI5mtJL1B1ZDIew_RWBjHX9n_nOgyY9mvq98-W7v__2u0cXcYraVhFolC5ijoZAqeh6E0Egj-CYWjE7GRps/s320/now.jpg" /></a></div>Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com1tag:blogger.com,1999:blog-8820178078481303605.post-37807523795799803692014-03-14T23:59:00.002-04:002014-03-15T00:06:24.607-04:00I Got This...<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPF6TOgUvikouB6dv5hClW3RstAPubmxRT2AW-yU-KMqtav3UlY7qq-xEwtlU6wukWUPQvqUPTw4nLV8Cr7KFd5w-tHpuuvw-WJSRC_8LQTFv27vsTFlMqPhgKh9UhC7hooNjh9Fk1pVY/s1600/IMG_0340ps.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPF6TOgUvikouB6dv5hClW3RstAPubmxRT2AW-yU-KMqtav3UlY7qq-xEwtlU6wukWUPQvqUPTw4nLV8Cr7KFd5w-tHpuuvw-WJSRC_8LQTFv27vsTFlMqPhgKh9UhC7hooNjh9Fk1pVY/s320/IMG_0340ps.jpg" /></a></div>Just when I think I have CF all figured out I am humbly reminded about the complexity and destructiveness of the disease. When the dietician called me from Sal’s doctor’s office I figured she was calling to discuss Sal’s weight gain/loss fluctuations. I was all prepared to recite his weights as well as all of the ways I was trying to get extra calories into Sal. With CF weight gain is essential to their health. Because Sal is unable to digest his food properly, even despite taking all of his enzyme pills when he eats, persons with CF are on a high calorie, high fat diet. Over the last year we have had some big swings in Sal’s weight. With all of the sports he plays we were attributing his weight fluctuations to his activity levels. Very quickly, I realized the dietician and I were not on the same page.
Sal is tested yearly for diabetes. About 10% of kids with CF are diagnosed with cystic fibrosis related diabetes. By age thirty 90% of person with CF develop CF related diabetes. And then she said it… <blockquote></blockquote>based on Sal’s symptoms we think he may have cystic fibrosis related diabetes<blockquote></blockquote>. One of the few times in my life I was speechless. My lack of words quickly turned to uncontrollable tears. After I hung up the call I found myself two hours from home and on the bathroom floor of public restroom and I couldn’t stop crying. My head was flooded with all of the diabetic patients I had taken care of. Then I started to remember some of the frequent flyer teenagers I had taken care of, several whom had passed away. Then my heart quickly went to my friend Jean who had lost her son to Type I diabetes. How on earth was I going to tell my son that because he has one chronic disease he now has another? How can we fit anything else in? And how will Sal react?
As my head raced with uncertainty, I decided I needed to pick myself up off bathroom floor and make my drive home. When I finally reached Rick on the phone I could hardly even recite the conversation I had with the dietician. I tried to explain diabetes in a 2 minute nutshell as well as what our new rituals might look like. Rick obviously heard the desperation in my voice and simply said, <blockquote></blockquote>Jenny we will figure this out, we need to get our game plan down and just do it!<blockquote></blockquote> I felt like I was one of the kids on his basketball team he was trying to pump up. For a brief second I choked back the tears and just smiled and I realized what he said, as simple as it may have been, he was right. We agreed to get a game plan together before we told Sal. For the next couple of days my kids thought I had pink eye. LOL I was still struggling to get it together. After a lot of praying and a lot of encouragement from family and friends I finally felt I could talk to Sal about our newest hurdle without any tears.
When we told Sal there was no tears, no why me’s. Sal leaned back in his chair, scratched the top of head, looked up at Rick and I and said, <blockquote></blockquote>I got this, just tell me what I have to do<blockquote></blockquote>. Then preceded to ask us if he will be like Mall Cop as he continues to imitate the scene from the movie when Kevin James is hypoglycemic and eats a dirty sucker out of the garbage and then miraculously ninja kicks up to get the bad guys.
I learned a lot through this experience. First of all, Sal is way stronger than I am and his perseverance and attitude are resilient. I also learned you do not know what the future holds. To try and speculate on what may or may not happen will drive you crazy. Live in the present and enjoy the moment! Preferable not two hours away on a public restroom floor…but you know what I mean!
As for now Sal will have to take his blood sugar and add insulin to his daily regime. The fight continues and now you know just one of The Million Reasons to Give to fund vital CF research! Our Annual event is less than one month away please join us on April 12th! See tour website for ticket info.
JennyAnonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com1tag:blogger.com,1999:blog-8820178078481303605.post-16410579192562247442013-10-23T20:42:00.000-04:002013-10-23T20:44:28.053-04:00Celebrate in Finding a Cure<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinonZ6GHMvdJUqyPs7SlZ5QwzIPHVjeG4S1DYo5y-NvB-bLtQpjPTw2WyQ1_jgPTU99iLLvy2h0kZc2lBaw5hbFyoiJ1yYL9L00RNl1Tu5F-Iejnh0P6RxPtKBj60BIMGhCCQs1TBkXCU/s1600/dyan+and+sal.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinonZ6GHMvdJUqyPs7SlZ5QwzIPHVjeG4S1DYo5y-NvB-bLtQpjPTw2WyQ1_jgPTU99iLLvy2h0kZc2lBaw5hbFyoiJ1yYL9L00RNl1Tu5F-Iejnh0P6RxPtKBj60BIMGhCCQs1TBkXCU/s320/dyan+and+sal.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbJjuwBVShT5Y2GES4mPZlMTJYspHAZop98JCh8bKOrHwRx5T7p3PrPa59uNaajtnIn8fD5sEqbePdyLwGBjStuzuU417bLJHyi17mOzs9377AYgZUyno0jxuhdUn4tcekNyF9O42xfiI/s1600/dyan.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbJjuwBVShT5Y2GES4mPZlMTJYspHAZop98JCh8bKOrHwRx5T7p3PrPa59uNaajtnIn8fD5sEqbePdyLwGBjStuzuU417bLJHyi17mOzs9377AYgZUyno0jxuhdUn4tcekNyF9O42xfiI/s320/dyan.jpg" /></a></div>It never ceases to amaze me the people that I have been able to meet through Sal's Pals. Even more moving is their generosity and their selfless acts of kindness. This past August Rick, the kids and I, had the privilege of attending a milestone birthday for Dyan. Dyan didn't want to celebrate her birthday with gifts or a fancy vacation get- away. Dyan wanted to celebrate her birthday helping to find a cure, all for a boy she had barely met. Rick and I were completely blown away by the Windom's thoughtfulness and generosity. Their random act of kindness continues to serve as an inspiration for us! I asked Dyan if she would be willing to write the blog this month. Graciously she accepted! Below is Dyan's story...
<i>This month I had the privilege to celebrate with an incredible family. I met the Pinardoʼs
through a dance academy that our daughters attend together. I became friends with
Jenny and was curious about Salʼs Pals and what it was all about. I had no idea what it
was other than an email address to contact Jenny. When I looked further into it my
heart just about burst. I had no idea that it was an organization to raise money and
awareness for Cystic Fibrosis. I also, was not aware that it was started by the Pinardoʼs
because their son suffered from the disease. The next time at dance I sat down next to
Jenny and told her how encouraging her story and life was to me. Reading her blogs
and seeing how far Salʼs Pals has come you couldnʼt help but want to be involved some
how. How could I be involved was the question I asked myself?
Here I was about to turn 40 years old. My husband was planning a birthday party for
me. He said to me, “would you want to turn your birthday into a benefit for a charity?”
The minute he said it my heart jumped. I knew exactly what I wanted to do. I have
everything I could ever want in life. I have a great husband, three kids, a dog, and my
health. What birthday present could ever top those things. I didnʼt need store bought
cards or gifts taking up space so this really wasnʼt a hard decision at all. I wanted to
dedicate my birthday party to raise money for Salʼs Pals. No gifts, or cards, just money
given to a great cause to fight Cystic Fibrosis.
When I called Jenny to ask her if that was ok she was really gracious and said, “are you
sure you have everything in the whole wide world that you have ever wanted?” I said,
yep, I have everything I have ever wanted. She then began to tell me more about her
son Sal. The day after my birthday event was Salʼs 12th birthday. He will now qualify to
try an experimental drug to help with his Cystic Fibrosis. I thought there is no way this
was all a coincidence and it made me even more excited to have this birthday benefit
for him.
The party came and we had a blast. My very generous and giving family and friends
gave over 700.00 dollars to help support Cystic Fibrosis. Jenny got up and spoke and
everyone was moved by all she had to say. We sang happy birthday to Sal. This time
when we sang... “and many more” it held a new meaning to me. I have had 40 years
of good health and the ability to breath normally. Here was this very handsome, sweet,
humble 12 year old kid whose life expectancy is 37. I had already passed that by 3
years. Itʼs not about the amount of dollars that was made or that it wasnʼt thousands
and thousands of dollars. Itʼs about the support of wanting to see a cure be found.
Every penny counts. My family is so blessed to know the Pinardoʼs and how they have
raise money to help find a cure for Cystic Fibrosis. I pray that this new drug possibility
for Sal will also be his cure. I hope and pray that on his 40th birthday I will be there to
sing.... and many more!!!!! Though Iʼll be close to 70 I still want to be there. I believe that
one day a cure will be found. Until then keep giving and supporting the scientific world
in finding that one drug that will save lives.
Thank you so much for letting us into your life. We walk along side of you and all the
others that are impacted by Cystic Fibrosis
</i>Dyan Windom
Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-21024901804476529692013-08-24T00:06:00.000-04:002013-08-24T00:06:05.800-04:00A little Late but Great Article!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmEMW3VAH5_vG4kffD6mj9Gv-X_tNFWogqproEERVepWc_qtPMLnOveHq1u0ssn9zPAay1TZ7CvpbdCky6oJbPrppYj_YLnsGKyRRexwvnCsKw2KzzEG28nRBKSUTyVNvih3ThjL-b_mg/s1600/SFS+Article+001sals+pals.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmEMW3VAH5_vG4kffD6mj9Gv-X_tNFWogqproEERVepWc_qtPMLnOveHq1u0ssn9zPAay1TZ7CvpbdCky6oJbPrppYj_YLnsGKyRRexwvnCsKw2KzzEG28nRBKSUTyVNvih3ThjL-b_mg/s640/SFS+Article+001sals+pals.jpg" /></a></div>Kathy Gullette from St. Francis de Sales High School does a phenominal summary of our spring event. Attached is the recent article posted in the Knight Life. Thanks Kathy!
Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-22071056040423076242013-04-12T01:32:00.002-04:002013-04-12T01:32:45.822-04:00Keep The Fight...<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWGuYjvs7AQMlV4_cHEdizGtn5oB_Jp8FM10RLzVKOXzbAcYExopNDtnXxmKO8Om3wZV5aUVKuCUGipjAXPOZu7mhJ6O0mTxw0xOnY4kbiXrXBfMgXqel6ZjCXsJTJMnYwHvrW-MYBtAA/s1600/208620_10102773685593755_1117850804_n%5B1%5D.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWGuYjvs7AQMlV4_cHEdizGtn5oB_Jp8FM10RLzVKOXzbAcYExopNDtnXxmKO8Om3wZV5aUVKuCUGipjAXPOZu7mhJ6O0mTxw0xOnY4kbiXrXBfMgXqel6ZjCXsJTJMnYwHvrW-MYBtAA/s320/208620_10102773685593755_1117850804_n%5B1%5D.jpg" /></a>
So here we are one day away from the Big Event! I took some vacation time to help with the last minute touches. But I still can't help but laugh at the vacation part. I hear vacation and I think tropical...not 38 degrees and work 18 hour days! It's not just me either; my committee has been here night after night helping as well. I have had many outsiders over the years ask why we do this. To be quite honest as I look around my messy house, the laundry piling up and my bed that hasn't been made all week, some times, for a second... I wonder the same thing. Then I remember this...
About 65 Roses®
"65 Roses" is what some children with cystic fibrosis (CF) call their disease because the words are much easier for them to pronounce.
Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year-old son, Richard, listened closely to his mother as she made each call.
After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary asked, "What am I working for, Richard?" He answered, "You are working for 65 Roses." Mary was speechless.
He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."
Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.
65 Roses® is a registered trademark of the Cystic Fibrosis Foundation.
Last month I had the pleasure of meeting Mary. As I sat listening to a speaker at The CF Volunteer Leadership Conference I looked over and I thought I recognized the women sitting next to my husband. I scribbled on a piece of paper to my husband to not let her get up. Very puzzled, Rick nodded. After the speaker, I quickly jumped up and introduced myself to Mary. As I attempted to thank her for all she had done I completely lost it and started to sob. Poor Mary must have thought I was a mess so she leaned over and gave me a big hug and a kiss. Once I gathered myself together I began to tell her had she not have done what she did all those years ago my Son may not be alive today. Mary smiled and said, <i></i>"Honey you are a mom first and you do what you can for your children and if everyone would do what you and your family does we would have this Damn think beat by now"!<i></i> Her charisma and passion were contagious a truly inspiring women. Mary had no drug companies, no gene discovered but she had hope! Even more remarkable she still has hope and she still continues the fight after all these years.
So if I learned anything from Mary it is, to beat this thing we need to do our part! And that means not sweating the small stuff. So for now I will make the coffee a little stronger and the laundry is gonna pile up for a few more days. We've got money to raise!
Until there's a cure,
Jenny
Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-6109453729340752962013-04-08T00:44:00.001-04:002013-04-08T00:44:32.357-04:00<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjVM1RleoRJ0-6w0BtkI2p_KjLYe30lDniBWyNb_KVpYgEhEeev4VhzzN29xtY1Ngcy5sOT_9r3WntI0tbaaSO6kkLZ0nkNu6BetPUIDjnoTCyZr3QEelSV7PsvHQ5SLQpNlDFn9OOJuw/s1600/dc.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjVM1RleoRJ0-6w0BtkI2p_KjLYe30lDniBWyNb_KVpYgEhEeev4VhzzN29xtY1Ngcy5sOT_9r3WntI0tbaaSO6kkLZ0nkNu6BetPUIDjnoTCyZr3QEelSV7PsvHQ5SLQpNlDFn9OOJuw/s320/dc.jpg" /></a>
Earlier this month I was able to travel to Washington D.C. with my sisters Nikki and Jenny as well as my brother Rick, to attend the Cystic Fibrosis Foundations’ National Volunteer Leadership Conference. It was such a wonderful experience. Most of my friends and family here know, that we have had a charity called Sal’s Pals that raises funds for the CF Foundation annually. My nephew Sal was diagnosed shortly after birth with this fatal orphan disease that only affects about 70,000 people worldwide. While Sal is fairly healthy for an 11 year old child with CF, we were starting to see decline in his lung function. He also has the most common form of the disease which is also the most devastating.
I can’t tell you how often I think of what would happen if we fail to find a cure or a medication that increases Sal’s quality of life or life expectancy. It is weekly, sometimes daily. Each time I get a missed phone call with no voicemail from my family, I panic. It breaks my heart to think of what my sister’s family goes through. I ache thinking of what Sal is experiencing as he grows older and his awareness and understanding of the disease grows too, not to mention what he has to do simply to breathe and live each and every day. His arsenal of meds he takes, his breathing treatments. The unfairness I’m sure he feels, that other kids don’t have to deal with this daily. I can’t fathom what that feels like, and I won’t pretend to.
For the very first time in the 11 1/2 years that Sal has been alive, I HAVE HOPE! I don’t think that I can accurately explain just what that means. I have always worked hard to raise awareness and raise funds and volunteer, but I’ve always had that feeling in my gut, that he might not make it to see a cure. That, even if I lived 100 years, we may not see a cure. We get closer and closer, that life expectancy creeps up and up (it’s now up to 37 years of age...how old are you?). But somehow, some days, it doesn’t seem to come fast enough for me to feel hopeful. Those days are OVER. This conference and it’s leaders explanations and education about research being done, and the new “blue pill” Kalydeco, have given me faith that is unshakable. I truly believe that in the next 15 years, Sal and all those with CF will be able to and be taking Kalydeco and his lung function will be normal. In fact if all goes well with phase 2/3 of the trial for his type of CF, he should be taking it within a year! He will still be able to breathe. He won’t have that typical 2% decline in lung function every year, resulting in multiple infections, hospitalizations, lung transplants, or death. Kalydeco is such a huge and important drug that Forbes named it the most important drug of 2012. It brings huge hope to not only those with CF, but those with other orphan diseases that a cure and life saving medications can be found. Any genetic diseases, it gives hope. It directly effects the underlying cause of CF. To me this is simply amazing.
I believe Kalydeco is a miracle drug and I think it has us very close to a cure for CF. I don’t know if you realize just how exciting this is, and it is, but we can’t stop now. This drug and research was developed because of people like those that are apart of Sal’s Pals, those people that attend our events, the people apart of the CFF foundation, all of it’s supporters and every cent given to the charity. We don’t have money hungry drug companies who are jumping at the chance to find a new drug for us, the 70,000 people with CF, Sal, aren’t worth it to them. Not worth the time or money or effort of developing life saving meds because it’s not profitable enough for them. I’ve realized it is up to me and others who raise and donate money to make a cure possible. We have come so very far, but we aren’t there yet. We can’t give up yet. There is still the other 96% of those with CF who cannot benefit from the drug yet. We had the chance to sit and chat with a woman by the name of Mary G. Weiss, one of the starters of the CFF. She had three boys decades ago with CF (her story goes that her little boy overheard her discussing the CF foundation and he thought she was working for 65 Roses). She is such a funny and inspiring woman. All of her children died of CF, but here she is at the conference, still fighting for them! All I can say is beautiful, she is a beautiful soul. For my friends and family reading this, for all of our passionate supporters and donors, I thank you with all of my heart and soul, for all you have done. I also urge you, keep standing with us, keep fighting for Sal and the others with CF. Because not only are we making history, but we are saving lives. As a beautiful fighter of CF says...
LIVE, LOVE, BREATHE
♥ Maria
">http://www.youtube.com/tellyawards?x=4ao-LXVEHpk.
</a>
Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-41870976966349116532013-03-26T08:22:00.000-04:002013-03-26T08:22:34.977-04:00Dance A Thon<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgXICq4JKpTRbu8w2O-teS-qcxh5aPUabnIsgMBz8MNy-O0Z4i2kyHSzx1gfOJ1k5hpar-ZUSEaPmPXvANBKJEAQ2LcqO4OS0gVAoPqxJWo9qBrbbesFuzlrLBuBKnYBTDYz5BfcJXLxc/s1600/DSC_0397.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgXICq4JKpTRbu8w2O-teS-qcxh5aPUabnIsgMBz8MNy-O0Z4i2kyHSzx1gfOJ1k5hpar-ZUSEaPmPXvANBKJEAQ2LcqO4OS0gVAoPqxJWo9qBrbbesFuzlrLBuBKnYBTDYz5BfcJXLxc/s320/DSC_0397.JPG" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA7dfz0KX3n-ifuSP3k3KMUSMf0E1aLsOvqB4I0kCm6YrrmGK5jLkE08luLQRVzQglOCiSXJj6o4Hf8Bv017aySYYpGwyY8oroLI6sAlS6G0l4NIE3qmmW8o_LXPCbPUtZ8cLj2KjpbKQ/s1600/jan+2013+149.JPG" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA7dfz0KX3n-ifuSP3k3KMUSMf0E1aLsOvqB4I0kCm6YrrmGK5jLkE08luLQRVzQglOCiSXJj6o4Hf8Bv017aySYYpGwyY8oroLI6sAlS6G0l4NIE3qmmW8o_LXPCbPUtZ8cLj2KjpbKQ/s320/jan+2013+149.JPG" /></a>Having a sister as a respiratory therapist, I’ve known what Cystic Fibrosis is for some time. However, I’ve never known anyone with the disease and even when I started at CK, I didn’t realize even then that I did. I was blown away to find out that this seemingly healthy kid, this life of the class who always greeted me with a smile and followed it with an excuse for his late work, had a life threatening disease. How could that be? From everything I knew about CF, Sal didn’t fit the bill.
Then his most amazing CK ally, Mr. Wit, filled me in. He told me all about Sal’s life, his incredible family, and he told me about Sal’s Pals. It began to make total sense to me. The reason he and Giana are such phenomenal kids became blaringly obvious – they have a phenomenal family and support system. So, alright, this kid has my heart… and he knows it… probably to a fault of mine… G too.
I have three kids of my own and would do anything for them, so I understand Rick and Jenny’s desire to fight for Sal, but the magnitude with which they have decided to take on this fight is awe inspiring. My husband, Pete and I have always tithed gifts of gratitude for our healthy children. We feel it is the least we can do for those who are not, so it felt natural when the opportunity arose to step up and help at a greater level with someone we knew. I felt compelled to help, do something more for someone in our own community. That was where the idea for the CF Presentation and Dance-A-Thon came along.
Do you remember your middle school dances? This thing could have been a total bust. I was terrified that my first effort for Sal’s Pals was going to be 150 wallflowers rolling their eyes for 90 minutes, while I panicked. So what did I do to ensure that didn’t happen? I called out the other clumsy middle school teacher and we had a Dance-off in front of those 150 kids. If that wouldn’t lighten the mood, nothing would. (I pre-practiced with Giana’s class, but Miss Schoettley does not need to know that!) What happened from there was just fantastic - a sea of orange clothes, orange bracelets, and sweaty heads all dancing for their friend – dancing for Sal. In the end, they raised over $1500 in one week and more importantly, raised awareness for CF to the Christ the King community. I was so proud of Sal and all the kids for what they were able to do during that week. By the way, I definitely won the dance-off.
So the short version goes like this…. There’s this boy in my class, he drives me nuts. Then he smiles like a used car salesman, and it generally works. One day, he gives me a sales pitch about this dinner and I am hooked. I’m in, Sal, I am committed. We are committed. We will work with your mom and dad until there is a cure.
Mrs. TraverAnonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-89274131062125315142013-03-18T21:32:00.002-04:002013-03-18T21:32:47.596-04:00People vs. ThingsPeople vs Things
If you’re reading this you most likely know many facts about Cystic Fibrosis. You know that at any given time there are 30,000 children and young adults in the U.S. living with this as yet incurable decease. You know that in 1980 the life expectancy of a person with CF was 14 years, in 1990 - 18 years, in 2009 -35 years and today that number is into the late 30’s. This giant leap in life expectancy for CF patients is a direct result of the CF Foundations activities. Their award winning business model has gained more than anyone could have expected in the area of scientific research for finding a cure for CF. Through the years the foundations effort has methodically added years to patients’ lives with the development of treatments and medications. Just recently break through medications have been developed and are in trial that dramatically effect some CF patient in a positive way and the scientific method of reaching the goal of finding a cure is well planned for several years to come.
Dr. Richard Simon, Internal Medicine and Pulmonary Disease at The University of Michigan has been with CF for 37 years. At a recent CF function he said this “When I first started working with CF I knew there was a light at the end of the tunnel, I just couldn’t see it. Now I can”. This statement implies that one of the best CF Doctors in the world believes that a cure will one day be found for CF. Will it happen in my life time or yours? No one can say for sure, but before it can happen, we must believe it will and work toward that end.
SalsPals Believes!!
WE WILL:
Never surrender.
Climb as high as we need, not wait for the mountain.
Work harder on ourselves than on our task.
Do this together.
What will history say about us?
Will it be “What were these people doing?
OR
How did they do what they did?
Let’s work as hard as we can to reach the light at the end of the tunnel so people ask “How did they do it”.
Until There's a Cure,
Terry Jiannuzzi
Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-38434549008018298742013-01-21T20:10:00.000-05:002013-01-21T20:51:18.728-05:00Leaders Making a Difference<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtOg7pO3lfFT49qfVBpdEX5wm7uvIsp5O0IWxEG2ATCiuOXfnfCmWsyqtC4hlavg6ZfGX1ZCgJ8G1-sh2XzG79ISI6BbqWw-1xXVQO47yLvYKe1AufnY3kq8vKX5jWkbksaTEqqpCRl_Q/s1600/DSC_0217.JPG" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="132" width="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtOg7pO3lfFT49qfVBpdEX5wm7uvIsp5O0IWxEG2ATCiuOXfnfCmWsyqtC4hlavg6ZfGX1ZCgJ8G1-sh2XzG79ISI6BbqWw-1xXVQO47yLvYKe1AufnY3kq8vKX5jWkbksaTEqqpCRl_Q/s200/DSC_0217.JPG" /></a></div>
I have had my share of horrible bosses, no not quite like the movie but horrible in the sense that they were unable to gain the respect of the staff which ultimately always led to their down fall. Leadership and respect are earned not appointed. Anyone can be appointed into a leadership position but true leaders, effective leaders know that being a leader is far more than being qualified on paper. Leaders have a systemic way to guide their team and allow for feedback and continue to ever evolve, always changing, always growing.
A couple of weeks ago I had the opportunity to speak with the junior high students at Sal's school about cystic fibrosis. The sixth, seventh and eighth grade students all gathered into the gym as Shelly and Mary Ellen from the Cystic Fibrosis Foundation explained what CF is to the children. Sal and I then explained what a typical day for him is. Sal showed the kids his vest and how he does his treatments. Surprisingly enough the kids had great questions and we left Sal to field them. One of Sal's peers asked, "What is the life expectancy of those with CF and don't you wish you didn't have it"? I looked at Sal and asked if he was okay to answer and he quickly looked extremely confident, as Sal often does, and nodded yes. Sal then looked out at the 150 plus students and teachers and replied, "The life expectancy for CF is 37...And no, you don't ever want to have CF but I wouldn't change it because of all the people we have been able to help". The look of panic on the children’s faces when they heard that the life expectancy was only 37 quickly turned to confusion when Sal exclaimed he would not change the fact that he has cf. As Sal's mother I couldn't help but get teary eyed at what I had just witnessed. Thankfully Shelly was there and began to explain to the kids what Sal meant by helping others and not changing his situation. Shelly explained Sal's Pals and talked about the money and awareness we have been able to create. The children began to cheer and the mood was quickly lifted as the kids realized there was hope for their friend. After we had shared with the kids all we could about cf I ended the program with this story.
<i>An old man walked up a beach littered with thousands of starfish, beached and dying after a storm. A young man was picking them up and flinging them back into the ocean.
"Why do you even bother", the old man scoffed, "You’re not saving enough to make a difference". The young man picked up another starfish and sent it spinning back into the ocean. "Made a difference to that one", he said.
</i>
After the story I continued to tell the kids that I realized that as parents we treat them like children but the reality is, they are. But it doesn't mean that they can't make a difference in the world they live in. Whether it be volunteering for a charity or performing a random act of kindness they can make a better place to live for themselves and others. I told the children that if they took one thing away from today’s presentation that it be, to go out and Make a Difference Every Day!
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibmI2NeUXoOWYeoGJPDnJPJVk_kCwFUJ2zimd8QI5oOnZIaAWh_PuwsbfH5zvxFlO1rBXQWmZhHsYxnN6a4UnuDCcFiEMewAGhPMARRfiOym0d08DGJfE5S8aLxUl5mLUHE7-f0e91NHo/s1600/DSC_0480.JPG" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="132" width="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibmI2NeUXoOWYeoGJPDnJPJVk_kCwFUJ2zimd8QI5oOnZIaAWh_PuwsbfH5zvxFlO1rBXQWmZhHsYxnN6a4UnuDCcFiEMewAGhPMARRfiOym0d08DGJfE5S8aLxUl5mLUHE7-f0e91NHo/s200/DSC_0480.JPG" /></a></div>
When we think of leaders we don't often think of children. But when I saw Sal up there in front of his peers answering questions no adult should answer, let alone an 11 year old I was amazed at his courage and strength. My little leader shined brightly! While I would love to take credit for Sal’s behavior I know that his courage and strength were fostered by other individuals who were intently listening in the crowd. We often forget when we send our children to school for over six hours a day that someone is leading them and guiding them. I am truly grateful that my children have had the opportunity to be surrounded by a group of educators that are dedicated to making a difference every day! Thanks especially to Mrs. Traver and the advisory group for inviting us to share our story. Our teachers lead by example and are dedicated to making our children better people and one day...our future leaders!
Did I forget to mention...those future leaders raised over $1500 for cf in a weeks time, I think they are well on their way!
Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-28040371934502368652012-08-16T21:16:00.000-04:002012-08-16T21:16:09.654-04:00SPIRIT<blockquote></blockquote>Hard to believe the kids are already heading back to school and Sal is entering his third season of football. Our big event came and went and our tenth year was by far the best yet! No doubt, with each passing year our event grows deeper and our passion stronger.<blockquote></blockquote>
<blockquote></blockquote>Shortly after Sal's diagnosis and we decided to enter into the fundraising world, I read a book. The book was titled, <i>The Spirit of Lo</i>. The book was written by a husband and wife, Don and Terry Detrich, who had a child with cystic fibrosis. The book<strike></strike> takes you on a journey in the life of a family dealing with chronic disease and all of the affects they have to deal with in addition to raising their young family. I, being a new mother of a child with CF, found extreme comfort that in the face of adversity the family still found time to raise money for The Cystic Fibrosis Foundation. Lo, their daughter with cystic fibrosis begins to fundraise herself and later becomes the poster child for cystic fibrosis in her native state of Oklahoma and throughout the country. After reading the book I could not help but be empowered and hopeful. So, I found Terry's contact information and asked her if she would come and be a guest speaker at our second annual event. My husband called me crazy, actually stalker might have been the term. But the book was so amazing that I wanted Terry to share her families’ journey with all of Sal's Pals. And she did. Terry flew in all the way from Oklahoma and told her journey to the more than 500 person crowd. At the end of her story everyone was standing with not a dry eye in the room. I don't think Terry understands how much her attending our event changed my life. Her kind words of wisdom and generosity all those years ago have not been forgotten. At that time Lo, her daughter, had been doing well and cystic fibrosis was defiantly not slowing her down! Over the years I have continued to read about their family and their continued success in the fundraising world.<blockquote></blockquote>
<blockquote></blockquote>It is with great sadness that I share with you the passing this week of Lo Detrich. Lo was 28 years old. Over the past few years Lo had suffered from two failed lung transplants and a kidney transplant. Terry recently wrote on Lo's Caringbridge page, <blockquote></blockquote>"it's the spirit that enables each of us to find the strength to do something we can't believe we can do by ourselves."<blockquote></blockquote> Terry defiantly instilled this <i>spirit</i> in her daughter and it was evident throughout her life. Terry also helped me to recognize this <i>spirit<strike></strike></i> when she attended our event all those years ago. For me this same <i>spirit</i> is evident in our family and our friends. In fact, I can't think of a better definition of what they have been to Rick and I.<blockquote></blockquote>
Eight years after reading the book I finally understand the <i>spirit </i>. Thanks Terry for continuing to be a source of inspiration. And to Lo...May you forever breathe easy.
<blockquote></blockquote>Until there's a cure,<blockquote></blockquote>
Jenny
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Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-41065568419559327172012-05-04T03:10:00.001-04:002012-05-04T03:13:05.628-04:0065 Red Roses<div class="separator" style="clear: both; text-align: center;">
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So, I'm not gonna lie. I've been up till 2 am everyday for the last couple of weeks. Between work, the event and day to day family stuff I've been beyond busy. To top it off I've have less than 36 hours to make it all happen before I board a plane and not to return until 48 hours before the biggest day of the year. As I sat and looked at my list getting bigger instead of smaller, (this is where the not lying part comes into effect)I felt for a brief few hours some mild anxiety... aka chest pain relieved with wine not nitro. As a reward to myself I thought that I would switch up the order and start from the bottom. On the bottom of my list read, "Watch cf documentary". The documentary was about a 23 year old Canadian girl who had cf. In 2010 I had watched Eva blog from her bedside as she waited for her 2nd double lung transplant. In watching her daily blog you could see how fast she was being overcome by cf but her spirit continued to fight. As the days went on it became extremely difficult for me to watch because I knew how it was going to end. Then one day one of my sisters called and shared the news that Eva had passed away.
About a month ago that same sister got a phone call from a producer to see if she wanted to be a part of distributing Eva's movie. The producer was trying to get private viewings in the United States and started by contacting followers of the blog. Oprah Winfrey, decided to debut the movie on her new Own Network and it aired in the US tonight. So list in one hand and wine in the other I decided to be a rebel and check off my list from the bottom. The documentary takes you through Eva's journey as she waits for a lung transplant. As I began to view the first couple of minutes it was a quick reality check. I’m so inundated with my life around me that I forgot that, I can breathe easy. I don't cough when I take a deep breath and I don’t swallow 40 pills a day. Eva reminded me that life is not about the small stuff. At the end of the day we are left with family, friends and our health. I am fortunate to have all three.
Somehow after watching the movie staying up past 2 am doesn't seem so bad. Thanks Eva for my reality check! See you all next week as we continue in our tenth year of fighting cystic fibrosis.
Until there's a cure,
Jenny
http://65redroses.livejournal.com/Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0tag:blogger.com,1999:blog-8820178078481303605.post-67079589840851845922012-04-15T22:29:00.000-04:002012-04-15T22:29:28.405-04:00What's in a neighbor?What the heck is a Blog?? Yep, I googled it after being asked by Jenny to be a guest blogger for the Sal's Pals blogspot. It's a web log, a way to reflect on life. Let's do that.
I'm Ron Reeder, married to Lisa and we have 3 boys, ages 9, 6 and 2. Which is why I'm a little late getting this blog in! I grew up in East Toledo, moved to the Bahamas for a few years and came back to the "nickel" in the early 80's. Stay with me. I learned a game called soccer in the Bahamas, and after coming back to the states I continued to play whenever and wherever I could. In the 90's I played for a men's team in Oregon Ohio, which is where I met a friend that knew I was looking for a house. He suggested I come to West Toledo and look on his street, Stannard Drive. Dude, I'm an East Sider, West Toledo! I don't have any friends over there. Fast forward a few years and I ended buying a home on Stannard. It was the late 90's, and I loved all things Chicago, Bulls, Bears, Blackhawks and yes, even the Cubs. On a great summer night, we had the front door open, watching the Bulls just dominate the Jazz and we could hear this cheering from across the street. It was in tune to every big basket the Bulls made, turns out the new neighbors across the street like the Bulls too! The next day I met Rick and Jenny, and we became great friends. Actually, the next season we went to a Bulls vs. Spurs game in Chicago, but I will keep the details of that weekend getaway off the blog! We were young, just getting married, starting a family, it seems like yesterday. I can remember the excitement in Rick and Jenny, getting ready for the baby. Then with one phone call, your life changes. It was Rick, he told me that Sal had Cystic Fibrosis. I sat on the phone speechless as Rick talked with this sense of calm. I don't remember much of that call, but what I do remember is him saying, we gotta do something. Whatever it takes, I was all in.
Sal's Pals started with a group of family and friends, all of us ready to do whatever we could. We all had different connections, different skill sets. We learned together how to make this charity what it is today. With Jenny and Rick leading us, providing vision, Sal's Pals has raised over half a million dollars! They are taking CF head on, by generating funds which buy science, and science is buying life. In 1959, the median age of survival of children with CF in the United States was 6 months. Now, it's 37.4 years! I have been fortunate to meet so many great people that are a part of Sal's Pals, all of whom are my friends. I have built relationships with many different sponsors of our events. One phone call and it's food, beverages, golf and more. All of them wishing us success at our fundraisers. I can't thank them enough!
This past August, my family spent a week in the Outer Banks with Rick, Jenny, Giana and Sal. From sun to sand, pool to hot tub. Our kids played together, argued with each other (kids do that!) but we made some great memories. What started so long ago has led us to where we are now. I won't stop until there is a cure!
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYA1UylRIzBxtCq0d1P7CPxeS2ga89o79ebfySsUPZekOXGn_MIoJLjtPJLFO4rOEXg8tUxvSB3UUA99WOZUqLQGeK9XHUDDl7z51m2xfukCJmftHBegihzHy7inZ2QC9SINeuGdk-ClA/s1600/039.JPG" imageanchor="1" style="clear:right; float:right; margin-left:1em; margin-bottom:1em"><img border="0" height="150" width="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYA1UylRIzBxtCq0d1P7CPxeS2ga89o79ebfySsUPZekOXGn_MIoJLjtPJLFO4rOEXg8tUxvSB3UUA99WOZUqLQGeK9XHUDDl7z51m2xfukCJmftHBegihzHy7inZ2QC9SINeuGdk-ClA/s200/039.JPG" /></a></div>Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com1tag:blogger.com,1999:blog-8820178078481303605.post-42331677609821289282012-02-07T23:51:00.000-05:002012-02-08T00:15:50.968-05:0010 Years in the making...Ten years ago I remember telling a friend that I didn't want to fundraise. I didn't want to talk about CF and I sure did not want to spend all of my free time fighting it. I was inundated with doctors appointments,feeding schedules and I felt like I was giving more medicines to my newborn baby then I did to my patients in the ICU. I was terrified about my families future and even more terrified that I had no control over my life. I felt as if I was under a microscope and everyone was watching. I could feel the sorrow in peoples eyes when they asked how Sal was doing and it broke my heart. Cystic Fibrosis felt like it was consuming my life and even when I tried to pretend everything was normal I felt worse. Well, four months went by after Sal's diagnosis and it seemed that the only thing that did make me feel like I had any control was learning all I could about cf. The fear of the unknown, that's what made me feel so terriable inside. Once I could accept our new reality and fully understand what it was that we were dealing with then, then I could move on. With the motivation of my sister Nikki and the support of our family and friends Sal's Pals was born! For the first time everything felt right. Sure, we had no idea what we were doing when we entered into the fundraising arena but what I did know was that it felt right. The microscope felt as if it had been lifted and the sorrow I once felt as people looked at my son turned into helping hands.
Over the past ten years we have held our annual dinner and auction, wine tastings, corporate golf outings, motorcyle runs, school and corporate jeans days, taught science classes,St.<strike></strike>Patty's Day bead selling events,cornhole tournamnets,girlscout rocking chair events, Sal's Pals at the Mud Hens,Casino trips, New York City Marathon, Tatoo Parties, Nascar races, radio Shows, Carnivals, Weddings, Parking Lot Party and newly added to the list is a RODEO event! If I would have had a crystal ball ten years ago and seen this list I'm pretty sure that would have been the end of me! Ten years wiser, I know now God doesn't give you more than you can handle.
The continued success of the theraputic drug pipeline and the advancements in cystic fibrosis research that are "adding tommorrows everyday" for those afflicted with cystic fibrosis are improving my sons life that I was once was so uncertain about. Please join us for our <b>10th</b> Annual Dinner and Auction as Sal's Pals continues in the fight against cystic fibrosis. The event will be held <b>Saturday May 12th, 2012 </b>at St. Francis High School.<div class="separator" style="clear: both; text-align: center;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipwXlBHLRvwQoewVIvZcQHiCdhLz_dRvsl8lDVG99RbsHu8Uev0ipZELA3EhewDTkNQBlLFAVqe4RaXlq6C4C-c-vZ5AnUJMcfH_X7_PfQHON4ilGQ6o68frZmcLLkBCykmzxRxhI8B4U/s1600/salswine10+%2528108%2529.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="200" width="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipwXlBHLRvwQoewVIvZcQHiCdhLz_dRvsl8lDVG99RbsHu8Uev0ipZELA3EhewDTkNQBlLFAVqe4RaXlq6C4C-c-vZ5AnUJMcfH_X7_PfQHON4ilGQ6o68frZmcLLkBCykmzxRxhI8B4U/s200/salswine10+%2528108%2529.jpg" /></a></div>Anonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com1tag:blogger.com,1999:blog-8820178078481303605.post-74493831138600354812011-11-20T12:02:00.001-05:002011-11-20T17:02:22.134-05:00I am thankful for...cbsnews.com/video/watch/?id=7386952n
I am thankful for all of the reachers, scientist,the cystic fibrosis foundation, nurses and doctors who have dedicated their lives in the fight against CF. The video clip above shows us how our fundraising dollars are at work, and people are literally breathing easier because of it!
Until there's a cure,
JennyAnonymoushttp://www.blogger.com/profile/02643656525557583987noreply@blogger.com0