| |
|
Title: |
1st Annual Out Run Rett Run Walk To Benefit Rett Syndrome Research Trust Long Island |
|
Sub Title: |
at New Suffolk Waterfront in New Suffolk, Suffolk County, Long Island, New York |
|
Date: |
May 7, 2016 |
|
Time: |
9:00 AM to 1:00 PM
|
|
Location: |
New Suffolk Waterfront |
|
Street Address: |
First Street |
| |
New Suffolk, NY 11956 |
|
Description: |
1st Annual Out Run Rett Run Walk To Benefit Rett Syndrome Research Trust starting at New Suffolk Waterfront in New Suffolk, Suffolk County, Long Island, New York.
Run or Run/Walk to benefit Rett Syndrome Research Trust in honor of Maren DeSantis. Out Run Rett 5K is an opportunity to encourage community support for girls who are sidelined from so many of even the simplest activities because of Rett Syndrome.
Maren DeSantis, a Mattituck resident, was diagnosed with Rett Syndrome in December 2012. Right before her first birthday, Maren lost her words and the ability to stand, walk, and use her hands. Simply, Rett is horrible. But with the tangible hope of transformative treatments on the horizon, Maren and another young girl in Southold may be granted a future unburden from the effects of one faulty gene. The Out Run Rett 5K is an opportunity to raise needed research funds and encourage community support for two of Southold's youngest residents and all the girls who are sidelined from even the simplest activities because of Rett Syndrome. Come show your support on the beautiful North Fork this spring and run so that one day she can.
Rett Syndrome Research Trust (RSRT)
The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world’s premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda. By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible. |
|
Contact: |
203-445-0041 |
| |  |
| |  |
| |
|
|
|
 |
|
