Parents host One Love, One Heart 5K to benefit rare disorder, daughter on Dec. 8

Jim and Jen Pomfret are preparing to mark the fourteenth year of the One Love, One Heart 5K Walk/Run on Saturday, Dec. 8, at 10 a.m. The event supports those who have a rare genetic disorder called Cornelia de Lange Syndrome (CdLS), including their daughter, Maya.

“It’s a way for Jim and me to do something positive for the CdLS Foundation,” Jen said. “It helps to have the community and your friends and family when you do something like this. Sometimes it can be tough having a child with CdLS, so we put a lot of energy in here.”

An estimated 20,000 people in the U.S. have CdLS but remain undiagnosed and/or without support services. Individuals with CdLS range from mildly to severely affected, though most have similar physical characteristics including smaller hands and feet; thin eyebrows that meet in the middle; long eyelashes; upturned nose; and thin, downturned lips. Some individuals have limb differences, including missing fingers or arms. Common medical problems include GERD, bowel obstruction and congenital heart defects.

All profits raised go to the CdLS Foundation, which provides free services and support to families like the Pomfrets. While the event benefits the Foundation financially, Jen emphasizes that it is emotionally rewarding for families as well.

Refreshments will be provided, and the top male and female runners overall and in each age group will be awarded. Long-sleeved T-shirts are guaranteed for all pre-registered runners and while supplies last on race day.

Registration for the road race is $25, but increases to $30 on race day. Immediate family members — parents and siblings of an individual with CdLS — receive free entry, but are still required to register. The event will be held rain or shine.

The race will take place at Medlock Park, 874 Gaylemont Circle, Decatur, 30033. For more information, contact Jim or Jen Pomfret at pomfretj@comcast.net or 404-838-8184. To register, visit www.active.com/decatur-ga/running/distance-running-races/one-love-one-heart-5k-2018.

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