End Cystic Fibrosis This Decade: a CF Smackdown

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The world goes dark, for a time, when the doctor says your baby girl has been diagnosed with cystic fibrosis. 

But times are changing.  Decades of research and development suddenly began yielding breakthroughs in 2012; and for families touched by the disease, the world is getting brighter.

First, a few grim background facts:  Cystic Fibrosis (CF) is a chronic, progressive, and ultimately fatal genetic disease, primarily damaging the respiratory and digestive systems. A diagnosis of CF can be a patient’s, and parent’s, worst nightmare-- CF is indiscriminate, cruel, and, until now, incurable.  But in January 2012, CF got its first well-deserved kick in the crotch by American researchers and the FDA, with the approval of Kalydeco, a medicine proven to control the disease in a subset (4-5%) of CF patients.  What’s significant about this CF crotch-kicking, and the underlying research, is that:

  1. It addresses the root cause of CF, not just the symptoms.
  2. Its reach will extend to a broader subset of CF patients (clinical trials are underway).
  3. It is only the beginning.

In other words, what we’re learning is cracking the armor of this disease, and the CF smackdown has begun. With your help, CF could be almost fully treatable within the decade.What’s happening in Chattanooga?  

  1. Dozens of families in the Chattanooga area are affected by CF.
  2. Chattanooga is fortunate to have one of only 110 accredited CF Centers in the United States, a testament to a dedicated local team helping families from all around the region. This team and many local families have been steadfastly supporting the search for a cure for years. Especially now that there is traction, contributions will make a difference.
  3. Partly of Chattanooga origin, at least one other promising effort is now underway. The collaboration involves scientists from Israel, Birmingham, and Bethesda, and results that could extend to a broader class of CF patients, and even beyond (to muscular dystrophy, spinal muscular atrophy, and more).

How can you help?Contribute to this cause on Causeway-- the timing is historic, and your donation will be doubled with a match from a local source, up to a $25,000 match. 100% of these funds will pass through to the Cystic Fibrosis Foundation (CFF), with Chattanooga’s name all over it.Will the money be dissolved in a pool of wasteful bureaucracy and silly admin expenses?Quite the contrary. First, 100% of your contibution (actually up to 200%, given the match) will go to the CFF to be allocated to the effort. Second, the CFF knows what the hell it’s doing.  This isn’t a nonprofit who blows money on junk mail and Sally Struthers campaigns. They invest well, and their proverbial “search for a cure” actually just found one, in 2012, for a significant number of CF patients.  The next round is in the pipeline. Third, given the current rate of traction, your contribution will make an actual difference in the lives of children and adults who are battling CF right now.Bottom line:

Researchers just landed a big ol' haymaker that has knocked cystic fibrosis to its knees, for the first time in history. But while CF is down, it isn't yet out. So join the CF Smackdown today, and let's all pile on together.

Even as you read this, some kids, and adults, are receiving their first dose of a medicine that will essentially neutralize their disease. Amidst a research revolution, you are witnessing the reign of CF coming to an end, and your contribution will help liberate tens of thousands from cystic fibrosis.  

On behalf of every single one of those patients, their friends, and their families, thank you sincerely for your help.

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comments 3

Posted Nov 7th at 2:17pm by Tonya munsey

I love what u all are doing. My grandson is 6 months old and he has cf it is so hard seeing him fight for his life some times he has had several surgeries all ready we live in morristown tn and we don't have a lot of money but if there is some way we could help u raise money that would be great and I will pray for all of u with cf and there families god bless you all

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Posted Feb 18th at 10:51pm by Heather Kralj

Hopefully we can raise a little money through me running for Lily at the Country Music Half Marathon this April! Looking forward to running for that beautiful little girl of yours! xo

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