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Out Run Rett 5K raises funds for research of neurological disorder

05/22/2017 11:22 AM |

Hundreds turned out to Out Run Rett Saturday in New Suffolk. 

The annual 5K raises money for research to a cure for Rett Syndrome, a neurological disorder impacting several local children. This year’s event honored four kids living with Rett.

Organized by Lena DeSantis, whose daughter Maren has Rett, the race is in its second year.

Shawn Fitzgerald of Cutchogue finished first in 18:30. The women’s winner was Suzy Heffernan of Cutchogue in 20:38.

Rett syndrome is as prevalent as cystic fibrosis, Huntington’s and ALS, which are better known. It is vastly underfunded compared to those disorders, according to the Rett Syndrome Research Trust, which seeks to raise research funding.

Researchers discovered in 1999 that it is caused by mutations in a gene on the X chromosome known as MECP2, which produces proteins critical for normal brain function.

Because it is an X-linked disorder, Rett affects girls almost exclusively. Girls diagnosed with Rett are often called “silent angels,” as they quietly see all that is going on around them.

Rett affects an estimated one in 10,000 females and is not an inherited disorder, according to the National Institutes of Health.

Event organizer Lena DeSantis and her daughter, Maren — a Mattituck resident with Rett Syndrome. (Credit: Elizabeth Wagner)

Three Long Island girls with Rett Syndrome – Maren DeSantis of Mattituck, Ella Rogers of Garden City, and Rachel Garms of Southold.

Christine Salerno of Manhattan (left) and Maren’s aunt Dawn DeSantis of Los Angeles (right) traveled to New Suffolk to support Out Run Rett.

Mary, Mia, and Lily Slovak of Laurel and Sue, Reese, and Ellie McKenna of Cutchogue running the bake sale.

Volunteers sold homemade treats to raise money for Rett research.

Volunteers sold homemade bracelets and key chains to raise money for Rett research.

Megan Rice of Southampton, Jayla Snider of Cutchogue, and David Rice of Southampton.

Keri Stromski of Jamesport and Kristin Lievre of Wading River embracing this year’s theme – Superheroes.

Women of Just Kids showing their support with a “GO MAREN” superhero ensemble. G: Kristin Oliver, O: Kate Oliver, M: Maria Passadakes, A: Sarah Caggiano, R: Caren Goebel, E: Tammy Federlin, N: Holly Felice.

Racers hit the ground running.

Lena and Maren DeSantis lead the 5K.

Maren’s Just Kids preschool teachers Kate Oliver and Maria Passadakes enjoying the race.

Runners take to the streets of New Suffolk.

Mattituck Girls Lacrosse Team showing their support

Mattituck Girls Lacrosse Team showing their support.

Jayla Snider of Cutchogue and the Mattituck girls lacrosse team.

Christine Salerno of Manhattan.

Jack Kelsh of Garden City racing for Team Elladoodle in his Capitan America and Batman costumes.

A young girl running in her superhero costume.

Members of Team Elladoodle racing for Ella Rogers.

Shawn Fitzgerald of Cutchogue finished 1st overall with a time of 18:30.

Suzy Heffernan of Cutchogue and Indira Schwarting of Southold high-five at the finish line.

Contestants race to the finish line

Lena and Maren DeSantis reach the finish line.

Children race to the finish line.

Mattituck Girls Lacrosse Team crossing the finish line.

Team Elladoodle: Ella Rogers’ family supporting her in her fight against Rett Syndrome.

Team Elladoodle: Ella Rogers’ family supporting her in her fight against Rett Syndrome.

Team Elladoodle: Ella Rogers’ family supporting her in her fight against Rett Syndrome.

Ginger Johnson of Shoreham, Denise McKeon of Holtsville, StephanieMincieli of Laurel, Amy Prager of Mattituck, and Jayla Snider of Cutchogue with Rachel Garms, a Southold resident with Rett Syndrome.

The Mattituck girls lacrosse team.

Ben Ortiz of Greenport finished 3rd overall with a time of 19:59.

Mother and son medal-winners Tina and Tanner Vaccarella of Cutchogue.

Bonnie Connelly of Riverhead wearing her homemade superhero cape.

The Out Run Rett 5K was held in honor of four little girls with Rett Syndrome – Lily Salerno of Manhattan, Maren DeSantis of Mattituck, Rachel Garms of Southold and Ella Rogers of Garden City.

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