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Out Run Rett 5K

Saturday, May 20, 2017

9:00 am

Maren, a 5 year old Mattituck resident has Rett Syndrome, a genetic disorder causing significant disabilities. Today, she cannot stand without assistance, walk, talk, or use her hands. But along with this terrible diagnosis comes amazing hope. As a single gene disorder, the cause is known. Gene therapy has completely reversed Rett in animal models, and recent studies confirm that the same is possible for humans. Our hope is real and for the first time ever, technically possible. But science is expensive and we need help funding a clinical trial.

Contact Information:

Lena DeSantis




New Suffolk
1st and Main Streets
New Suffolk