The Franklin News-Post|
P. O. Box 250
310 Main Street, SW
Rocky Mount, Virginia 24151
|‘A Stand for Rett’ will raise money for research of the neurological disease|
Miss Greater Franklin County Outstanding Teen 2014 Jessalyn Hayes is finding ways to help those in need. She recently delivered books to children in the pediatric unit at Carilion Roanoke Memorial Hospital, above, and this Saturday, she will be raising money for Rett syndrome research.
Friday, May 2, 2014
By STACEY HAIRSTON - Staff Writer
Miss Greater Franklin County Outstanding Teen 2014 Jessalyn Hayes will host a fundraiser Saturday, May 3 to raise money for the International Rett syndrome Foundation (IRSF).
"A Stand for Rett" will be set up in the Rocky Mount Kroger shopping plaza from 11 a.m. to 3 p.m.
Lemonade will be available for a donation, as well as baked goods, temporary tattoos and other activities for children.
Other local titleholders will be on hand Saturday to hand out informational fact sheets on Rett syndrome, a postnatal neurological disorder, seen almost exclusively in girls. It is often misdiagnosed as autism, cerebral palsy or a non-specific developmental delay.
The syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor and autonomic function. These can include learning, speech, sensory sensations, mood, movement, breathing, cardiac function and even chewing, swallowing and digestion, according to the IRSF website.
Rett syndrome symptoms appear after an early period of apparently normal or near normal development until 6 to 18 months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when the child loses communication skills and purposeful use of her hands.
Other problems may include seizures and disorganized breathing patterns while she is awake. Over time, motor problems may increase.
Caused by mutations on the X chromosome on a gene called MECP2, Rett syndrome can strike all racial and ethnic groups and occurs worldwide in one out of every 10,000 to 23,000 female births.
Hayes said she has two friends with Rett syndrome and because of the disorder, they will "never be able to participate in pageants, dance or sing on a stage, or have the opportunity to speak about things they care about."
"As Miss Greater Franklin County's Outstanding Teen 2014, I will get many opportunities to speak in public," said Hayes. "It is my hope to be a voice for my friends and other girls with Rett syndrome and to spread awareness of this little known disorder so that fundraising efforts will be as successful as the research they support."
"In addition to spreading awareness, I hope to raise money for research for a cure so that someday no girl will have to live life with Rett syndrome," she added.
Those unable to attend Saturday's event can visit the "virtual lemonade stand" at www.rettsyndrome.org/jessalyn to purchase a virtual glass of lemonade by credit card.
Donations are tax deductible and will help fund research for treatments and a cure.
A rain date for the event is scheduled for Saturday, May 24.
Hayes, a freshman at Franklin County High School, has been actively supporting Rett syndrome research since 2008 and participates annually in the Roanoke Strollathon for Rett syndrome fundraiser.
According to Hayes' mother, Jessalyn is "very passionate about raising awareness."
"Raising awareness of this condition could potentially help diagnose a girl with Rett because it is often misdiagnosed as something else, which would limit the girl's access to new treatments," Lori Hayes said. "It is also very exciting to play even a small part in one day curing what is being called 'the first reversible neurological disorder.' As a family, we have strived to do all that we could to help spread the word and raise funds towards Rett research."
More information about Rett syndrome can be found at www.rettsyndrome.org.