Wednesday, September 30, 2015

“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

Tuesday, March 24, 2015

Sal's Pals 2014 Million Dollar Celebration

Volunteer Leadership from an Aunt's View

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 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 CURED FOREVER
. 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,, 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 to learn more about Sal and our fight for a cure! 2. Donate! Every dollar counts! It's not how much we give but how much love we put into giving. ― 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 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 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 Or you can personally email me at 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. You gave me forever within the numbered days, and I'm grateful. -John Green, The Fault in Our Stars Together we can give Sal and others with CF an infinite number of days! Until there is a cure! Aunt Nikki