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Post by firefly on Nov 5, 2009 12:47:01 GMT -5
I'm doing a blogathon on December 12th, 2009 for Battens Disease Awareness with all proceeds going to BDSRA. It's in early planning phases but I'm currently looking for families that have blogs either ABOUT battens disease OR life with battens disease in it (no matter how rare it is... parents, grandparents, or step parents). If you want me to add your link to my blog that I've set up please let me know... I just need the link! I will give more details VERY soon... I try to accomplish one step to set up each day. Also, if you would be interested in sharing your story of Battens please let me know. I'll be more than happy to feature your story during my blogathon. Or even interview style. I plan on giving information about Battens Disease and I plan on answering any questions people have. I also plan on spotlighting others who are battling this disease. (I went with awareness because up until we got told it might be, this was a disease that we hadn't ever heard of. Even the nurses and a lot of the doctors where I work haven't ever heard of it and you need to explain it to them.)
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Post by Kat on Nov 7, 2009 23:19:39 GMT -5
My blog is www.mrskatvon.com and as our diagnosis is so new (July 09), quite a lot of it is in regards to JNCL. My email is mrskatvon@gmail.com
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