Recent Blog Posts

View Post: Hope Under the Stars....
4 Nov 2009 by Jamie Werner  
Their oldest son was diagnosed with a fatal, rare, genetic neurological-degenerative disorder called Juvenile Batten Disease. You can read more about this little boy's story at http://www.willherndon.org/ But even better, ...
View Blog: Woodlands Photographer - Suburban Chic Photography - http://suburbanchicphotography.blogspot.com/

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View Post: There is Hope for those that Suffer from Battens Disease
30 Oct 2009 by admin  
Battens disease is a very rare illness that affects the brain and starts in young children. It is a part of the disorders known as neuronal ceroid lipofuscinosis. Battens disease usually refers to the infantile form of NCLAAs but some ...
View Blog: LIMED - World News, Video, Blog - http://www.limed.se/

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View Post: October 19, 2009
18 Oct 2009 by admin  
Gene Therapy & Batten Disease Dinner by Kelly & Dr. Nicholas Dainiak as guest speaker on Batten disease. Thirty people attended and $1100 was raised. Thank you Kelly Dainiak for putting this event together for us. ...
View Blog: Our Promise to Nicholas - http://ourpromisetonicholas.com/

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View Post: Batten disease
25 Oct 2009 by blmeanie  
A childhood neighbor of mine has a child with Batten disease. Batten disease "life limiting" disease that is brutal in how the symptoms progress in the children affected. The parents of this particular child are trying to create and ...
View Blog: FoilForum - http://www.foilforum.com/forums/

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View Post: Batten Disease Charity Event: September 26th « Parrish the Thought
5 Sep 2009 by amyparrish  
If you're a regular follower of our blog, you may remember a post earlier this summer about Miss Celia, a little “fairy” I had photographed to capture as much spirit as I could while she battled with Batten Disease. ...
View Blog: Parrish the Thought - http://amyparrish.wordpress.com/

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View Post: B Amp Q Flourescent Light Batten Disease, B Amp Q Neon Light ...
23 Oct 2009 by admin  
0 ★, ★ Limited ★, ★ Port ★, ★ History ★, ★ Large ★, ★ Loads ★, ★ BQ Light bulb amnesty ★, ★ Led ★, ★ Lights,down ★, ★ Cable ★, ★ B Amp Q Flourescent Battens ceiling Lights ★, ★ Blue ★, ★ Install ★, ★ uv Light ...
View Blog: Delay-relaygjkj - http://delay-relaygjkj.dyndns.org/

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View Post: Back from New York
9 Oct 2009 by Kat  
I took Rachel to the University of Rochester yesterday and today to be seen (and to see) Dr Mink and the Batten Disease Clinical Research team. I was lucky enough to have this short trip planned during the time that Heather and Tyler ...
View Blog: As told by Kat - http://www.mrskatvon.com/

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