My husband Adam and I became involved in finding a cure for Cystic Fibrosis when our son Jack was diagnosed as a newborn in 2012. We were 30 years old and Jack was 10 days old when we learned that the median life expectancy for people with CF was 35 years.
As new parents, we cycled through many stages of processing this information. Eventually, family and friends helped us gain our footing and we found ourselves part of an incredible community, surrounded by a sea of possibilities and grounded in hope based on rapidly progressing science. The burgeoning possibility of a bright future - and a sibling - for Jack became our dream.
With a newfound respect for the passing of time, we wasted none and in 2014 we lovingly welcomed Abigail to our family. Via amniocentesis, Abigail was found to have the same CFTR gene mutations as Jack, joining her brother in the fight against CF on day one.
We wrangle CF as a family every day, doing our best to stay one step ahead of the symptoms that could slow Jack & Abigail's growth and diminish their lung capacity. In the early years we watched science advance and held on to hope was that this would someday cease to be an uphill battle. You can view "a day in the life" of Jack & Abigail growing up with CF in our annual Great Strides videos, featuring songs composed and performed by Adam, here: (via copy/paste into a browser window) https://www.youtube.com/watch?v=pmrydYxlkWY&t=3s
Recently, we've reached an incredible milestone in our journey! In June 2021, Jack & Abigail became eligible for the newly FDA approved modulator therapy, Trikafta. For the first time ever, the kids are taking a medication that proactively functions to help correct the defects at the cellular level that cause the symptoms of CF. While this isn't yet a cure or a guarantee that CF will no longer progress in their bodies (we still administer all previously prescribed mediations and treatments) it has been an incredible asset and priceless *safety net* amid the COVID-19 pandemic and our move from IA to MD where I now work at the CF Foundation National Office.
It is my privilege and pleasure to have joined this grassroots organization, started in 1955 by concerned parents of children with CF just like me, and to work alongside what has become a world-class team responsible in large part for the bright tomorrows we now have more confidence than ever that Jack & Abigail will see. It is so clear to me that your contributions to this organization make a real difference for the CF community we’re proud to both be a part of and to serve.
If you are able, please consider sharing our cause, our story and/or making a donation today. Whatever means of support you choose, Adam, Jack, Abigail and I thank you so very much for your contribution. Today the median life expectancy for people with CF is 50. We have every reason to believe that with your help, this number will continue to climb.