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September 1, 2012 by Carrie Ostrea

Crowdfunding helps little girl get one step closer to a diagnosis

Reposted from Talking Points Memo.  Written by Carl Franzen.

Crowdfunding, or fundraising over the Web by soliciting a mass of donors, is good for more than just financing pet projects like music albums and iPhone accessories.

Just ask the Nieders: The New York family of three (and one dog, Parker) have been searching for answers to the cause of four-year-old daughter Maya’s global developmental delays. She hasn’t been able to speak aside from a few short words for most of her life.

Now, thanks to crowdfunding, they may have a clue: Researchers at the Rare Genomics Institute, a nonprofit founded in 2011 dedicated to helping patients with unique genetic diseases, on Tuesday reported that a genome sequencing test performed on Maya’s DNA and paid for with online donations has uncovered a previously unknown gene variant that could be responsible for Maya’s developmental challenges.

“Though we need to do further research to confirm this first gene discovery, it is a major milestone,” said Jimmy Lin, a geneticist at Washington University in St. Louis and the principal founder of the Rare Genomics Institute, in a statement.

(Read more)

Filed Under: Blog, front side Tagged With: Rare Disease News

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