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How to Help
Please support our fundraising and public awareness efforts!
We believe that with your help, we can write a happy ending to Taylor's Tale.
We're doing everything we can to save Taylor's life, but we can't do
it alone. If you are interested in joining our efforts, please email me.
Because Taylor has Infantile NCL, we are focusing our efforts on the
development of a cure or viable treatment for children with that form of Batten Disease.
Research
Funding
The federal government allocates approximately three million dollars for Batten Disease research--not
nearly enough. BDSRA provides research funding at the rate of about $400,000 annually. As is the case with any research
effort, Batten Disease research requires constant funding. Even though the scientists involved in Batten Disease
research are dedicated, they must have funding in order to pay for laboratory supplies, animal feeding, development of protocols,
etc.
To make a donation in support of Batten Disease research, please make your check payable to BDSRA (Batten
Disease Research and Support Association) and send it to the address below:
BDSRA
c/o Linda Weisbruch
918 Ardsley Road
Charlotte, NC 28207
BDSRA is a not-for-profit
501(c)3 organization, and all donations are 100% tax-deductible. Donations in support of our cause are also approved for matching
gifts by many businesses, including Bank of America and Wachovia. If you're considering making a gift, remember to check
with your employer to find out if this applies to you.
Public Awareness
In addition to funds, we also need your help spreading the word. Batten Disease is rare enough that very few people even
know it exists. Public awareness is a huge part of our battle, and you can help by sharing this website and Taylor's story
with others.
Volunteer Your Time
If you are interested in getting involved on a more
personal level, please email me; don't forget to include your name and contact information!
Awareness Wristbands
Awareness wristbands with this website's address and "Support Batten Disease Research" are available. Please
email me if you are interested in receiving a wristband.
Taylor's Tale T-shirts
Taylor's
Tale t-shirts are available! Please email me if you would like to order a t-shirt!
 Steering Committee
A steering committee is in
place to direct all local efforts on behalf of Taylor and the advancement of Batten Disease research and public awareness.
The committee includes:
Sharon King, Laura King Edwards, Callie Alley, Anne Pipkin Benson, Sloan Dudley, Jane Grosse,
Kim Heath, Stacy Sumner Jesso, Amy Romeo, Leslie Schlernitzauer, Martha Schmitt, Amy Tribble,
Linda Weisbruch
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