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.