Huge day for cystic fibrosis

Today is a huge day in the fight to cure cystic fibrosis.  This morning, the Cystic Fibrosis Foundaiton and Vertex announced that the Phase 2a trials of VX-770 have shown positive results in targeting the basic defect in cystic fibrosis.  This is HUGE.  This is the first time ever where a drug has shown results that actually reduced the chloride levels in sweat tests.  As with all news like this, the Foundation cautions people to be “cautiously optimistic”, but just the fact that something like this exists is exciting.  Even if it fails, they have a base to build on for future drugs.  It’s coming!

 Whenever I hear of things like this, I think about what a few of the volunteers I talked to when we first got involved would always say: “You think this gala is a big party?  Just wait until the cure comes and we’ll be throwing the biggest party people have ever seen.”  Today has the feel like we should be picking out invitation designs.

http://www.cff.org/aboutCFFoundation/NewsEvents/index.cfm?ID=8476&TYPE=1670 

http://www.cff.org/aboutCFFoundation/PressRoom/2008PressReleases/index.cfm?ID=8475&blnShowBack=False&idContentType=3617&IDCT=3617

http://investors.vrtx.com/releasedetail.cfm?ReleaseID=301749

Sometimes it’s close to home

My wife opened up the paper this morning to search for an article her friend was going to be in for the museum event.  Instead, in both the local paper and in the Sun-Times, she found an article on a local reporter that passed from cf.  Every time she sees these, it realy slows down the day and makes her  (and me) think about what we are involved in.  She posted out to her online support group and received a lot of great feedback mostly centering around the fact that cf today is worlds apart from what cf was 45 years ago. 

http://www.suburbanchicagonews.com/heraldnews/news/823592,4_1_JO04_OBRIEN_S2.article

http://www.suntimes.com/news/obituaries/823966,CST-NWS-xobrien04.article

HGTV Design on a Dime

This past summer, our family was featured on an episode of HGTV’s Design on a Dime. They were looking to do a cause related show and they scouted both Chicago and LA for families related to different causes: vets, cancer related, etc. In the end, they picked Colin. It was a great experience. The designers, the camera guys, the producers all couldn’t have been nicer. In the end, we had a great looking basement and we got CFF mentioned on national TV. Check out the pictures.