Our team is driven by a dream that one day, every person with cystic fibrosis will have the chance to live a long, healthy life. You can help us reach that goal!
Our Great Strides Story
We became involved in finding a cure for Cystic Fibrosis when Jack, our first child, 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, we had learned that Abigail and Jack would fight CF together... and we were all ready with open arms and hopeful hearts.
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?vpmrydYxlkWY&t3s
Recently, we've reached an incredible milestone in our journey! In June 2021, Jack & Abigail started taking a newly FDA approved medication called Trikafta. This new med is a BIG DEAL because it is proactive - it helps correct the defect at the cellular level that causes the symptoms of CF and it WORKS! We are happy to report that the kids are thriving!
While this new 3-pill/day regimen (on top of their 1 hr/day vest treatments and 20+ additional daily medications) isn't a cure or a guarantee that CF will no longer progress in their bodies, it has been an incredible asset and priceless *safety net* amid the COVID-19 pandemic and our family's move from Iowa to Maryland where Myra has begun work as a Data Analyst at the Cystic Fibrosis Foundation National Office and Adam at Bullis in Potomac as an American Studies teacher.
Today the median life expectancy for people with CF is 56.We are at a pivotal moment in the history of this disease and your support matters! It would mean so much to us if you consider sharing our story or making a donation to keep the research momentum going. With your help, we can get closer to the finish line - a CURE for cystic fibrosis.
Whatever means of support you choose, Adam, Jack, Abigail and I thank you so very much!
DC Great Strides Walk Details:
June 3rd - Saturday
Check-in: 9:00 AM
Walk: 10:00 AM
The National Mall in-between 3rd and 4th Street (close to the Capitol) - look for the big white tent.
Parking/Transportation: There are many parking garages located around the area. If you are coming by Metro, take the orange, blue, or silver line to the Smithsonian Metro Station.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.