Maren, a 5 year old Mattituck, NY resident has Rett Syndrome, a genetic disorder causing significant disabilities. They say Rett is rare, but two towns over in Southold, 14 year old Rachel also lives Rett Syndrome. Rett is not hereditary and there are no known risk factors. Rett also strikes without warning; within a few months of their first birthdays, these previously "normal" little girls lost their first words and began what has become almost constant hand wringing. Today, neither can stand without assistance, walk, talk, or use her hands. 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 help getting to the finish line.
This year’s theme is superheroes. Join us on May 20th and show Maren, Rachel 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?
AWARDS: Awards given to top 3 in each age category as follows: 1-10 11-20 20-29 30-39 40-49 50-59 60-69 70-99
Teams Welcome. Superhero Costumes Encouraged. Sponsorships Available.
Can't join in person? Donations of any amount appreciated.
ALL FUNDS GO TO RESEARCH and donations and sponsorships are fully tax deductible.