3rd Annual Run for Rett raises funds for research

Published 4:30 pm Wednesday, March 21, 2018

Clouds of fog and purple and green powder permeated the damp air at Pell City Lakeside Park on Saturday, March 17.

Runners lined up in the parking lot, wearing white “Run for Rett” t-shirts. Some had purple tutus and wigs. All were there for a reason. For many, that reason was 7-year-old Julie Grace.

Julie Grace began talking before her twin sister did, but around the age of 16 months, she began to lose her words. Shortly after, she lost motor skills. The symptoms became increasingly worse. After many tests, including clinical and genetic, Julie Grace was diagnosed with Rett Syndrome.

“We’ve had such wonderful support,” Julie Grace’s mother, Melanie Carroll said. “One in 10,000 are diagnosed with Rett Syndrome, so there may be more in Pell City. I know there are more in St. Clair County. We want to raise awareness and get more information out there. So many are misdiagnosed because they share symptoms with cerebral palsy (CP) and Parkinson’s…like they are rolled into one. Many kids don’t get the therapies that they need.”

The Pell City High School Key Club along with Julie’s Army of Hope sponsored the Run for Rett event for the past three years. Julie Grace’s big sister, Kaylie Adcox, is the Key Club President and with her perfect score of 36 on the ACT, hopes to go into the medical field to study genetics, perhaps finding a cure for Rett Syndrome. 

Louisa Morlandt, a 5-year old girl with Rett Syndrome, and her family were also present at the Run for Rett 5K. Her mom, dad, brother and sister all participated in the race, with her sister Sophia winning first place in the girls 12 and under division.

Winners in each division were:

Boys 12 and under:

First: Peyton Pack

Second: Anthony Stocks

Third: Carter White 

Girls 12 and under:

First: Sophia Morlandt

Second: Ansley Gillam

Third: Leah Wilkerson 

Boys 13-20:

First: Andrew Brigman, who one first overall

Second: Michael Stocks

Third: Matthew Pate

Girls 13-20:

First: Margaret Seay

Second: Daphne Moon

Third: Caleb Fox

Boys 21 and over:

First: Joe Brock

Second: Adam Stocks

Third: Jonathan Hambrough 

Girls 21 and over:

First: Heidi Irvin

Second: Britney

Third: Karen Stocks

PCHS Key Club members set up water and color stations along the 5K route to spread a cloud of color as they tossed purple and green powder at runners as they passed. Despite the rain, there were 75 registered runners and the event raised over $7,000.

Also, for the second year, the PCHS Key Club was awarded a Youth Opportunity Fund Grant to cover expenses. They raised $5,000 in sponsorships from local companies. Funds received will go to assist Alabama families of Rett children with specific needs that are not covered by insurance and to benefit research through nonprofit Rett Syndrome organizations. In the previous two years, the event has raised over $7,500 for Rett Syndrome research.

Rett syndrome is a postnatal neurological disorder that occurs worldwide in 1 of every 10,000 to 23,000 female births across all racial and ethnic groups. While the disorder is mainly seen in girls, it can also affect boys in rare cases. Symptoms appear after a normal period of development until six to eighteen months of life, when there is a slowing down or regression of skills. Symptoms of Rett syndrome can include loss of motor skills including hand function and coordination, a decline in language skills, slowed growth, and trouble breathing. It is a lifelong condition that does not currently have a cure, but it is not a degenerative disorder.