My Xtreme Hike Story
Hi Friends, Friends of Friends, Family and other Wonderful Folks,
First, thanks for getting this far. Fundraising isn't my strong point, but the Xtreme hike supports an effort near and dear to my heart.
In Junior High and High School, my son, a talented catcher on his baseball team, was nicknamed Taz (short for Tazmanian Devil) for the ferocity and intensity, with which he played. We prefer to think of it as tenacity, which every individual with CF needs as they battle this congenital disease of the lungs, pancreas, liver, kidneys and nearly all exocrine glands.
CF treatment has grown up with my son: once common treatments of daily respiratory physical therapy, antibiotics, nebulized treatments, steroids, and hospital “clean-outs" have been replaced, for many—but by no means all CF patients—by the life enhancing and life extending disease modulating medication Trikafta, developed by Vertex Phamaceuticals in partnership with the CF foundations. In my own child’s lifetime, the median life span for a person with cystic fibrosis has increased from age 12 to solid middle age.
Though this is an enormous advance, this treatment is not available nor is it effective for everyone, and it is not curative. The CF foundation continues toaggressively support other research avenues which will target repair of the underlying genetic defect in a search for a cure. My goal in tackling the 26 mile-in-one-day Xtreme hike is to support the foundation in raising funds so that all people can take advantage of treatments that can provide benefit, and one day a cure for this devastating disease.
My son is now in his 40’s, and we are ever grateful that he has done so well and ever thankful for the scientific miracles the CF foundation has made possible with its research dollars. But we are so aware that others have not been so lucky, and so aware how much more needs to be accomplished so that all people with CF can live long, healthy and full lives.
Please help support me in this effort. You can make donation by visiting my web page http://fightcf.cff.org/goto/susankelly or the Team Taz page athttp://fightcf.cff.org/goto/TeamTaz. I appreciate anything support you can offer.
Gratefully yours, Susan