Charity ride to benefit Phelan-McDermid syndrome

Smoky Mountain Harley-Davidson, in conjunction with the Dixie Iron Riders, is hosting the Cruise for 22q Charity Ride on Aug. 1 to benefit the 22q13 Deletion Foundation, which supports families affected by the Phelan-McDermid syndrome.

Phelan-McDermid syndrome, also known as 22q13 Deletion syndrome, is a rare genetic anomaly caused by the absence of genes at the tip of chromosome 22, which play a vital role in the nervous system’s development. In an effort to bring more awareness to the rare genetic disorder, the National Health Information Center recognizes July 27 – Aug. 2 as Phelan-McDermid Syndrome Week.

“The charity ride is a great way to wrap up the week and bring some much needed attention to the disorder,” said Dr. Katy Phelan, cytogenetics director at Molecular Pathology Laboratory Network Inc., who identified the 22q13 deletion in 1988 while performing chromosome analysis on a newborn.

Cruise for 22q honors Stephanie Wermuth, an 11-year-old Blount County girl with Phelan-McDermid syndrome. Stephanie was diagnosed with the syndrome when she was 18 months old after her parents noticed she had webbed second and third toes.

The two-hour ride starts and ends at Smoky Mountain Harley-Davidson, 1820 W. Lamar Alexander Parkway, Maryville. Registration is from 3–4:30 p.m., and the ride is from 4:30-6:30 p.m. After the ride, there will be a live concert at The Shed.

Entry fee for the Cruise for 22q Ride is $20 per motorcycle, which includes the ride, a food voucher, ticket for the concert that evening at The Shed, and a commemorative item.

Charity riders and patrons of Smoky Mountain Harley-Davidson also have a chance to win a painting of a Harley-Davidson motorcycle on the day of the ride. With a $10 donation to the 22q13 Deletion Foundation on Aug. 1, donators get a raffle ticket for a chance to win a 16-by-20 canvas painting by Stephanie’s mother, Kathleen Wermuth.

For information about Cruise for 22q sponsorships or to preregister for the ride, contact Shanna Veiga at 273-1294.

Copyright 2009 Horvitz Newspapers