Monday, July 07, 2014

Help me keep the wheels in motion!

Hello,

I know it just seems like yesterday I was writing you about the Great Strides walk (actually it was 2 months ago), but we’re now three weeks away from the Cystic Fibrosis Cycle For Life in Woodinville.   Such is living in a place where the weather is nice in July.

But in that time, we have exciting news.  Vertex Pharmaceuticals has announced positive results in combining medicines to treat Cystic Fibrosis at the cellular level for the most common mutation of CF, which is the one my daughter Meagan has (http://www.nytimes.com/2014/06/25/business/international/vertexs-two-drug-cystic-fibrosis-treatment-shows-promise-in-clinical-trials.html?smid=fb-share&_r=0).  This isn’t quite a cure, but can dramatically change the lives of CF patients, and may set the stage for future treatments.  As we celebrate our freedom, the day that Meagan and thousands of others will be live in greater freedom -- freedom from some of her treatment regimen, freedom from frequent hospitalizations and limitations, and some freedom from the fear of this terrible disease -- seems to be in sight.

For those of you in the Northwest, this is a 20 or 60 mile bike ride from Red Hook Brewery in Woodinville, followed by party with music, food and beer.   This year’s 20-mile ride is flatter than last year, which should make it easier for recreational cyclists like me. You can join my team here:  (http://fightcf.cff.org/site/TR?team_id=17932&fr_id=2576&pg=team).


Whatever you can do, I appreciate the help you have provided in getting us this far,  and in joining us on to be a part of these next exciting steps.

Peace,

John McGuinness
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