Crestwood Sunset Hills Kiwanis
Crestwood-Sunset Hills
Serving the Children of the World
News
ST. PAT'S BASH
03/03/2018
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THE BASH IS BACK!!

Mouse Races
04/14/2018
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A NIGHT AT THE RACES (A View To The Future of Eductation)

Sponsored by the CSH...

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22nd Annual Golf Tournament
05/07/2018
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The 22nd Annaul Crestwood-Sunset Hills Kiwanis/Hawkins

Tournament May 7 , 2018...

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Last Weeks Program:

Program: Cystic Fibrosis

Mike Price, the father of a son with cystic fibrosis and an active member of the Cystic Fibrosis Foundation told us a very personal and emotional story about his son’s journey with CF and informed us about CF.  His 12 year old son Luke is one of 2 kids with CF at Sperreng.  Luke contracted the disease as a baby while on a trip to California when he breathed re-circulated air.    30,000 people in the U.S. have CF and the median survival is to age 32 (or 18-25 without a double lung transplant).  There are 1700 variations of the disease but 1,000 of them affect 5 or less people so it is very hard to get drug companies interested in it.  Due to the work of the Cystic Fibrosis Foundation, things have changed dramatically since Luke first contracted the disease.  The Foundation pioneered “Venture Philanthropy” where they will go to small drug companies that specialize in genetics and actually fund the research for CF drugs.  For the past 3 years Luke has been a test subject for one of these drugs.  At age 9 he courageously agreed to participate in this study despite the risks as he felt it was his calling to possibly help others.  In these 3 years he has gone from being in the 15-20th percentile of weight for his age with 38% lung function (and the likelihood that he would not live to age 20) to now being in the 67th percentile with 98% lung function.  This is the first drug that actually appears to be curing CF sufferers.  Another first is that FDA has approved a drug to act on 29 CF mutations without the need to go through the FDA trial process.  There is now more hope than ever.  Luke has made amazing progress and now plays in the band at Sperreng along with Blake, the other CF sufferer at Sperreng (although they can get no closer to each other than 10 feet due to the danger of cross infection).  Luke’s future looks brighter than ever before.