Tuesday, July 29, 2014

Thanks For Supporting My Cycle For Life!



The Cycle For Life was a great day!
  • The ride raised more than $100,000 for Cystic Fibrosis Research.
  • I raised nearly $1,000
  • I got to ride with great team members, Tan and Hristo from Amazon.
  • Kristin and the girls worked an *awesome* rest stop for the 65 mile ride.

  • I was able to complete the 20 mile ride with no problems for either myself or the bike.  Maybe I should aim for 65 next year?
  • It was a gorgeous day and a fun party afterwards.

Thanks for being a part of it -- the support from so many people from all over the country and different parts of my life means a lot to us.  

I hope the day will come soon when we can say you helped us find a cure for Meagan and thousands of others.

Peace,

John McGuinness

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