CFCR executive director, Bob Simmons, recently completed another X-treme hike to raise money for Cystic Fibrosis research and treatment. While hiking on Pilot Mounting in 2008, Bob and his friend Amos Beason came up with the idea to organize a 30.1 mile/one-day hike of the Art Loeb Trail as a fundraiser for CF.
“When Amos and I came up with the idea for the hike, medication to treat the underlying causes of CF was still a dream, “Bob explained. “Since 2009, the North Carolina Spring hike has become an official annual event, with an annual fall hike added in 2012 and hikes in other states beginning in 2013, raising millions of dollars. Also since then, real progress has been made in the search for a cure, with the discovery and certification of Kalydeco, the first drug to treat the underlying causes of CF in some people.”
Kalydeco offers hope for some people with CF (about 4%) by making the condition manageable and dramatically increasing their life expectancies. The annual cost of Kalydeco is about $300,000. While government funds are available to help offset some of that cost if approved they are limited, and much more help will be needed. Additional research and development is indispensable to address other forms of the CF gene and to make Kalydeco more readily available and affordable for those who may benefit.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. They are Benjamin Cobra Sapp (6) and Suki Louise Sapp (4), the grandchildren of Robert McCarter, CFCR Managing attorney, and his wife Cebby, and this year Bob hiked in support of Cobra and Suki.
Bob adds, “When (my wife) Jen and I began to support the CF Foundation several years ago, we did not know anybody affected by CF. Since then, we have been befriended by many people with CF and their families and friends. We have hiked with them; we have heard their stories of suffering and courage; we have shared the hope of new discoveries; and we have joined them in mourning those for whom the progress has come too late.”
Robert McCarter adds, “The Mayo Clinic describes CF as ‘a life-threatening disorder that causes severe damage to the lungs and digestive system.’ If you have the disorder, or love someone who does, that description, while accurate, doesn’t nearly describe the helpless feeling that accompanies it. I was and am touched by Bob’s amazing effort with them in mind and for all those with CF.”
Learn more about X-treme Hike and how you can get involved at their web site.