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Out Run Rett 5K

We want to thank everyone who came out with such energy and enthusiasm for this year’s Out Run Rett 5K. With great gratitude and pride, we are thrilled to report that the event raised over $25,000 for the Rett Syndrome Research Trust. Thank you to so many that made it a success: our sponsors and donors, over 200 participants, superkids Reese, Rafa and Luke, the New Suffolk Community and the Southold Town Police. Every dollar makes a difference to helping RSRT carry out its bold and exciting three-year strategic research plan, Roadmap to a Cure. We know that one day soon Maren, Rachel and the 350,000 others who struggle with Rett will have their voices back and will be able to thank you themselves for changing their lives.

– Lena and Paul DeSantis

Superheroes wanted.

Maren has Rett Syndrome. Rett is not hereditary and there are no known risk factors. There is also little warning. Within a few months of her first birthday, our seemingly “normal” little girl lost her newly formed words and we saw the first signs of what has become almost constant hand wringing. Five years later, Maren cannot stand without assistance, walk, talk, or use her hands. Almost worst, she has made it clear that she is lonely and wishes she “could do what the others are doing”. Simply, Rett is horrible.

But along with this terrible diagnosis comes amazing and tangible hope. As a single gene disorder, the cause is known: not enough of the protein MECP2. By restoring the protein levels, researchers have completely reversed Rett in animal models, even at late stages of the disease, and recent studies confirm that the same is possible for humans. Advances in gene therapy are pointing the way to fixing the disorder at its very core, with drugs to treat the myriad of symptoms currently in or planned for trials. Our hope is real and for the first time ever, technically possible. But science is expensive and we need your help getting to the finish line.

This year’s theme is superheroes. Join us on May 20th and show Maren and all who battle Rett that they have real live superheroes helping them fight and win. Together, we have the power to Out Run Rett. What’s more super than that?

Teams welcome. Superhero costumes encouraged.

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