Community Outreach – The Batten Disease Project
PortlandBusinessCommunity.com is committed to helping our community stay connected. To that end, we are happy to work with local organizations to publicize programs. Today I am sharing this video and story about Batten Disease.
You can learn more about The Batten Project by visiting their website: www.TheBattenProject.com.
Wikipedia describes Batten Disease as a rare, fatal autosomal recessive neurodegenerative disorder that begins in childhood. Also known as Spielmeyer-Vogt-Sjögren-Batten disease, it is the most common form of a group of disorders called neuronal ceroid lipofuscinosis (or NCLs).
The National Institute of Health notes there is “no specific treatment…” for this disease, but a new drug is in development and The Batten Project is working to raise $500,000 to enable further testing of the drug called CellCept. Please visit The Batten Project website for more information or to donate to the cause.
Ed Bejarana
BusinessBlogging.net
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Seems like one ugly disease! Hopefully the research will help. I gave $20, maybe others on this site could do the same.
After seeing this video I did some looking around on the internet. The Folks fighting Batten's Disease could use some help collaborating. Send a link to this article to some of your friends and ask they do the same. This is an important cause and could be a great community service we all hang our hat on.