As you may already know, Great Strides is the major annual fundraising event for the Cystic Fibrosis Foundation, and the Hawkins family is always deeply committed to raising awareness and bringing in donations to help the CFF further its goal to CURE CF.
Our sweet Ben had a couple of tough moments in January of last year and February of this year. He had to be hospitalized both times for different CF-related issues. He has been so healthy, and it has been easy for us to roll his extra treatments and medical needs into our routines--so easy, in fact, that I think we might even have been a little bit in denial about the seriousness Ben's disease. These incidents reminded us that CF is progressive, and sneaky, and ever-lurking, waiting for a chance to pop up and remind us that it's not going away.
You may have heard that a new medication (Trikafta) received FDA funding last year. You may also have heard that this medication can help over 90% of the CF population. We are beyond excited about the promise this new drug shows, and we have read countless stories of the incredible things it is doing for people with CF who are fortunate enough to be eligible for Trikafta: " I can sing an entire song in the car without having a coughing attack!" "I can sleep through the night! I haven't done that in YEARS." "My PFTs pulmonary function tests] went up over 20%." And so on. You may know that Ben will be eligible for this med once he turns 12, or once they lower the approved age.
What you may not know is that Trikafta hasn't been successful for everyone who has tried it. Or that Trikafta doesn't work on a small percentage of the CF population that includes some of Ben's friends. Or that the drug is so new it hasn't been studied for longterm effects.
What is clear is that, while Trikafta is a long-awaited blessing in the lives of those with CF and their loved ones, IT IS NOT A CURE. And we will not rest until 100% of the CF population has an effective treatment--until 100% of the CF population is CURED of this dreadful disease.
Please consider supporting us again this year in our quest to end CF once and for all. Walk with us. Buy our gear. Support our events. Make a donation so we can reach our goal again this year.
And THANK YOU. We are humbled again and again by your generosity, and we do not take for granted the fortune of having you by our sides.