My Xtreme Hike Story
We are a CF Family. Our CF Warrior is a husband, daddy, son, brother, friend and colleague. When he was diagnosed at age 2, his parents didn't know if he would live to see his next birthday. The life expectancy for kids born with CF in the 1980s was 14. When we met in 2005 at age 25, the life expectancy for kids born that year was about 35. We didn’t know how much time we’d have together as a couple…if we’d be able to have children…or watch those children grow together, but we hoped.
Keenan has worked so hard to maintain his health throughout his life, and we’ve been very fortunate to have access to health care and financial resources, support from family and friends, and of course the miracle of therapeutic drug development. Keenan has surpassed his original life expectancy by almost 30 years. He is the father of two amazing children who are miracles themselves, Nora (4) and James (1.5). He fights harder every day for them, for us, and for his fellow CF warriors.
- CF is a rare, genetic, life-shortening disease that makes it difficult to breathe, affects the digestive system and other essential systems of the body, and often renders CFers very vulnerable to infection.
- Every year, at least 2500 babies in the US are born with CF, that we know of.
- The life expectancy of someone born with CF has doubled in the last 30 years, YET many with CF do not benefit from existing therapies either because their disease is too advanced or their specific genetic mutations will not respond.
- We increasingly see “new” populations of CF patients properly screened and diagnosed, including within communities of color in the US. For these patients, raising awareness and increasing access to culturally and medically appropriate care is crucial.
- CFers are parents, caregivers, siblings, children, friends, and colleagues who struggle every day in the face of this devastating disease.
With supporters like you by our side, the Cystic Fibrosis Foundation continues to lead the way in the fight against CF. We personally know the impact your dollars can make. Please consider contributing any amount you can and/or sharing this fundraising page.
The MA Xtreme Hike at Jiminy Peak June 9-11 is 26 miles up in and around the ski trails and through state forestland. We are lucky to be joined in this adventure by Nora’s Godfather “Uncle Brendan” Cohn, one of Keenan’s lifelong best friends. Named for Keenan's beloved alma mater Georgetown, Team Hoya Saxa will put our able bodies to work to raise awareness, to raise money for further therapeutic development and expanded support services, and to help more CFers like Keenan survive and thrive.
We hike for all CF families, for babies newly diagnosed, for scared parents, for the children and adults living with CF and all of the people who love them. Please consider donating.