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Neelu Sodhi's Fundraiser:

Neelu & Rick Singh for Kleefstra Syndrome

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Neelu Sodhi

THE STORY:

Dear Friends and Family, I have created this fundraiser to help my best friend's son - Nikhil, after he was diagnosed with a very rare gene deletion and Kleefstra Syndrome. My best friend and her husband founded Genespark.org, the ONLY charity worldwide that is focused directly on reversing intellectual disability in many rare gene-linked conditions, of course with an initial focus on Kleefstra. Today, little is known about this syndrome but many scientific advances have been made and geneticists are closer than ever to making progress on a drug treatment. Funding is the biggest hurdle to progress but research to date and some very important (and exciting) recent developments in testing show we can make a difference for these children in our lifetime. Generally, Kleefstra patients like Nikhil have intellectual disabilities, speech impairments and various other neurological and physical abnormalities, which may include walking difficulties, heart defects, kidney/urological defects, respiratory infections and seizures. Please support us and help our grandson! For more information, visit www.GeneSpark.org.

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