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Out Run Rett 5K

Sat May 5, 2018 New Suffolk, NY 11956 US Directions

Out Run Rett 5K

In December 2012, my daughter Maren was diagnosed with Rett Syndrome, a rare genetic disorder caused by random mutations in the MECP2 gene. As an X chromosome-linked disorder, Rett primarily affects girls with symptoms manifesting at around one year of age. Rett strikes without warning and rears its ugly head slowly. My one year old that was a little delayed is now a four year old that cannot walk, talk, or use her hands. I wonder if today will be the day her seizures start or my back gives out from lifting her (and then what will I do). I watch her eating become slower with the knowledge that she may lose this simplest of daily living skill and need a feeding tube. I ask for more and more physical therapy sessions not to achieve my initial goals of standing or walking, but to ward off scoliosis. Rett is physically draining, socially isolating and emotionally heartbreaking.

But along with this terrible diagnosis comes amazing and tangible hope. Researchers have completely reversed Rett in mice and recent studies show the same is possible for humans. Recent advances in genetic engineering and targeted drug development are providing the tools to move from mice to humans, and researchers talk of “transformative treatments” being on the horizon, which may free Maren, another young girl in Southold, and the 350,000 other girls with Rett Syndrome world-wide. One huge source of hope is the Rett Syndrome Research Trust (RSRT; www.rsrt.org). RSRT engages top scientists to combat Rett and funded projects are innovative and most importantly, starting to have clinical applications. RSRT is also incredibly lean with 96% of all funds going directly to research. RSRT only has one goal--to cure Rett.

Rett Syndrome will be treated and eventually cured, the question is when. I lie awake at night worrying whether treatments will come soon enough to help Maren and know funding is the main limitation. So we are holding the Out Run Rett 5K run/walk in New Suffolk on May 7, 2016 to raise desperately needed funds. All money will be donated to RSRT. Out Run Rett 5K is also an opportunity to encourage community support for these girls who are sidelined from so many of even the simplest activities because of Rett. I am writing to ask you or your company to help support this event. I have included information on the race as well as sponsorship levels. Donations of any amount are appreciated. Thank you for any and all support.

Kind Regards, Lena DeSantis

All donations are 100% tax deductible. Please visit http://reverserett.org/take-action/events/out-run-rett-

5k/ to make a donation or fill out the attached form with check made out to RSRT. For more information, please contact Lena DeSantis at 631-594-2222 lmauntony@yahoo.com.

Top Donors

$6,529 Raised By 64 Donors

$500 On Behalf Of HAMPTONS NORTH FORK REALTORS ASSOCIATION
$500 On Behalf Of Ted and Ann DeSantis
$250 On Behalf Of Ella Rogers
$250 On Behalf Of Erik J. McKenna, P.C.
$250 On Behalf Of Louis Vaccarella
$250 On Behalf Of Maura Thompson
$250 On Behalf Of The Finnerty Family
$250 On Behalf Of The McCallion family
$250 On Behalf Of Tim Mcmanus
$200 On Behalf Of Team Elladoodle from The Hubbell’s
$100 On Behalf Of Bernadette Russell
$100 On Behalf Of Cathie and Tom Dickerson
$100 On Behalf Of Elladoodle
$100 On Behalf Of Heather McCallion
$100 On Behalf Of Karen Canny
$100 On Behalf Of Kathleen Galvin
$100 On Behalf Of Kelleher Family
$100 On Behalf Of Kristin Oliver
$100 On Behalf Of Lily Bennett
$100 On Behalf Of Liz Casey
$100 On Behalf Of Lorraine Warren
$100 On Behalf Of Maren
$100 On Behalf Of Maren
$100 On Behalf Of mary slovak
$100 On Behalf Of Mary Twomey
$100 On Behalf Of Matt Matt
$100 On Behalf Of Rachel
$100 On Behalf Of Roseann Walsh
$100 On Behalf Of Sarah Agins
$100 On Behalf Of Southold Mother’s Club
$100 On Behalf Of Susan Crinnion
$100 On Behalf Of Team Elladoodle
$100 On Behalf Of Team Elladoodle
$100 On Behalf Of Team Elladoodle
$100 On Behalf Of The Ahearn Family
$100 On Behalf Of The Ambachs
$100 On Behalf Of The Boutges-Duffy Family
$100 On Behalf Of The Gallagher Family
$50 On Behalf Of andrew borsen
$50 On Behalf Of Christine Lambiase
$50 On Behalf Of in honor of Dr Anne Smith
$50 On Behalf Of Jill Tapper
$50 On Behalf Of Maura Gattis
$50 On Behalf Of Michael Banados
$50 On Behalf Of Mike, Moira, Jack Goscinski
$50 On Behalf Of Patricia Buonaiuto
$50 On Behalf Of Rubi Rajbanshi
$50 On Behalf Of Team Elladoodle
$50 On Behalf Of William Wallace
$25 On Behalf Of Brittney Baron
$25 On Behalf Of Kathy O’Brien
$25 On Behalf Of melissa buckley
$25 On Behalf Of Noah Berry
$25 On Behalf Of Rebecca Lucak
$20 On Behalf Of Denise Denise
$15 On Behalf Of Grainne Breen
$14 from Anonymous
$10 On Behalf Of John Szymczak
$10 On Behalf Of Maria Martinez
$10 On Behalf Of Martin Zuniga
$10 On Behalf Of Rachel Terry
$5 On Behalf Of Dan Fredericks
$5 On Behalf Of Jodi Record
$5 from Anonymous

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