I did the Ice Bucket Challenge last night. Dont judge. It was humid and I had just completed a long walk with a friend. Nice hair, eh? Anyway, I nominate Naomi Tucker, Rhonda Stauss, and Keri Coons. You have 24 hours. Also, I want to take a minute to mention another rare disease. Our daughter Erin has been battling Primary Sclerosing Cholangitis for 7 years now. PSC is another formidable foe, and PSC researchers struggle to find research funding. I want to honor her ,so I also have donated to PSC Partners Seeking a Cure. Finally, ALS and PSC are two of thousands of orphan diseases, so named because of the relatively low numbers of people whom they afflict. There is a wonderful organization called NORD (National Organization of Rare Diseases) that supports rare disease organizations that are struggling to fund awareness and research activities. According to NORD, any disease affecting fewer than 200,000 Americans is considered rare. There are nearly 7,000 such diseases affecting nearly 30 million Americans. NORD is here to represent all patients and families in the U.S. affected by rare diseases. NORD supports both ALS and PSC efforts. alsa.org pscpartners.org rarediseases.org
Posted on: Tue, 26 Aug 2014 16:16:43 +0000
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