Rare Disease Day!

Posted by in (Team) Rachel & Batten Disease

Today is the official “Rare Disease Day” of the year – 2/28/2011.

As you already (probably know) Rachel has a very rare and fatal disease. The Batten Disease Disease Support and Research Organization funds thousands of dollars for research work into this disease.

Please consider donating to the BDSRA in Rachel’s honor. Thank you!

http://www.bdsra.org/donate.html

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The First Post

Posted by in (Team) Rachel & Batten Disease, Boston, Julie, London

I’ve stayed up until nearly 2am to put this blog together and make it look good enough to put Rachel’s name on it.  It’s kind of hard for me to stay on top of everything when the children are awake, especially when Rach is home.

Not everyone who will read this knows about us so I’ll quickly explain that we are a family of 6 that lives in the Boston suburbs with 4 great kids.  Rachel is 10 and has (suffers from (I hate that term))  Juvenile Batten Disease which is very rare and you can either read more about it here or go directly to www.bdsra.org and the Batten Disease Support & Research Association will be able to educate you better than I can.  Our other children are Julie (6), London (5) and Boston (4) and they are truly the best kids (wish the food bill were a little cheaper but other than that… lol).

In the last year I (Rachel’s Mom) have been working on getting Rachel’s educational and medical needs met and more recently have done some fund-raising work.  We hosted a Lemonade stand on the fourth of July, had a table at Endless Summer and have started selling candles at Batten Candles.  The next major fund-raiser we are working on is a 5k Race / Walk in our beautiful seaside Hull, Massachusetts town (May 2011).

If you have any fund-raising ideas for Batten Disease Research, please contact us (and thank you)!

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