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Friends & Family,
If it seems like we've been holding this bike ride to fight cystic fibrosis for a long time, and "cycling" back to you year after year for help, it's because we have - for 15 YEARS in a row now! The very first bike ride for CF in the country started here in Colorado, and now it takes place every year in about 40 cities across the U.S.!
A friend asked me recently "With the success of the three new 'miracle drugs' introduced to treat CF during the last several years, why do you still need to raise more money - haven't you now cured the disease?" How we WISH that were true!
Cystic fibrosis is such a complex disease, with so many physiological impacts, even wildly successful drug treatments that actually modify genetic behavior can't fully overcome this disease. While our daughter Sarah's quality of life has been dramatically improved thanks to generous donations from you and others, she continues to struggle every day to stay ahead of the destructive forces going on inside her body.
Here's a snapshot of the last few weeks:
• multiple resistant bacteria strains caused her to go on 2 weeks of I-V antibiotics, starting in the hospital for 3 days and continuing at home after that; she connects the portable dispenser via a feed line to a permanent port in her arm for several hours/day, while going about her work and play and sleep
• because she recently contracted a particularly vicious and resistant 'bug', she begins a 2 year(!) treatment of a three-drug oral 'cocktail' - one of which is also used to treat leprosy! In addition, these drugs have some very nasty side effects (like potential loss of vision and hearing).
• this brings her total number of pills she must take every day to 40
• she also must perform multiple breathing treatments every day, using various tools and machines
Does all this stop her from living a busy life? #*@! NO! Why? Because of the success of all the treatments she continues to do every day, which ALL came from the CF Foundation's research, funded by the efforts behind events like our bike ride. Pretty amazing...and humbling.
And yet, these successes clearly aren't enough to be called a 'cure'.
So we'll continue to ride, and to be thankful for generous donations from friends and family, that we know will be effectively used to fund life-saving research the CF Foundation has become famous for. With approx $.90 of every dollar raised still going to research (not salaries and operational expenses), CFF remains among the most efficient non-profits in existence. Your donations really do make a big difference!
Thank you for your continued support, it means the world to us!
Walt & Family