D. Maurice Kreis
Donald Kreis's 2016 Template
What a banner year for our family and the quest to turn CF from "cystic fibrosis" to CURED FOREVER! Rose is now in her junior year, thriving at the Putney School and riding Que to dressage glory. Her brother Felix was in Washington lobbying Congress for the CF Foundation. I'm the individual giving chair for our local CFF chapter. Please support us by supporting the CF Foundation -- truly the greatest story in medicine.
of $3,000 goal raised
I heard two remarkable promises in June 2018 that I want to tell you about here.
The first was from my son Felix. We were on our way to Washington to participate in the annual Teen Advocacy Day of the CF Foundation, and we stopped by New Hampshire Public Radio to talk about our trip. He promised -- on tape -- that when he becomes a major league baseball player he will donate HALF his salary to the Cystic Fibrosis Foundation!
The second promise came just a day later in Washington, when I attended a panel discussion at which a bunch of big cheeses from the CF Foundation spoke. The biggest cheese of all -- the CFF's chief executive officer, Dr. Preston Campbell -- promised that in the quest to reduce CF to "cure found," absolutely no one will be left behind.
Those were sweet words to the ears of this CF dad. Why? Because my daughter Rose has so-called "rare and nonsense" CF mutations. In other words, she is part of the ten percent of CF patients who don't have the most common CF mutation (508Fdelta), which means she doesn't benefit from the so-called "modulator" drugs that have been hailed as the big breakthrough in cystic fibrosis care.
A lesser organization might just declare victory and go home, after coming up with therapies that at least potentially reduce CF to a fully controllable condition for 90 percent of the people with the disease. But that has NEVER been the way the CF Foundation operates. This, to borrow a phrase from the foundation, is truly "the greatest story in medicine" -- from Dorothy Hansine Andersen (the pathologist who first identified CF in 1038) to Francis Collins (who led the team that found the CF gene, and now runs the National Institutes of Health) to the Foundation's Nonsense and Rare Mutation Initiative.
Thanks to co-investing with Vertex Pharmaceuticals in modulator drugs that hit paydirt, the CFF cashed a check for $3.3 billion in 2014 and, in one fell swoop, became one of the nation's most wealthiest healthcare charities. So people sometimes ask me: Why should I donate to such a wealthy charity?
The answer, from Rose's perspective, is totally simple. That $3.3 billion is not enough money to get us where we need to be.
Where we need to be is: Therapies available to ALL CF patients, regardless of what mutation they have (or, I might a