Maren of Mattituck NY, was diagnosed with Rett Syndrome in December 2012. Right after her first birthday, our bubbly and babbling baby girl almost overnight and completely unexpectedly, lost her words and the ability to stand, walk, and use her hands. In the last years, Maren has become essentially “locked in” a body that does not work and sidelined from even the simplest of activities. Rett takes so much from Maren and we are so fearful of what could still come. We hear daily about families facing difficult choices on feeding tubes and scoliosis surgery, girls in the ICU struggling with pneumonia, and the worst but all too common, a young girl losing her fight to Rett. Unfortunately, Maren is not alone. Two towns over, Rachel is also battling Rett and together, they join a too long list of 350,000 other girls and women with Rett.
But along with this terrible diagnosis comes amazing and tangible hope. Rett is a single gene disorder and scientist have reversed Rett in the lab. Advances in gene therapy are pointing the way to fixing the disorder at its very core in human patients with the first clinical trial possible in 2019. Out Run Rett is an opportunity to raise needed research funds to accelerate progress—we are truly out running Rett. Our Run Rett has also become a celebration of the wonderful Southold Town community that shows so much love and support for two of its youngest residents. We are so grateful to so many for all the support over the years. So, come join us on beautiful North Fork this spring and run, walk or cheer so that one day she can.
Teams welcome. And because they were so much fun last year, superhero costumes encouraged.