Fundraising Walk Set To Battle Devastating Disease That Strikes Young Girls
Royal Oak (CBS Detroit) – It's a rare disease with an uncommon name, but like any lurking danger it could strike someone you love. Nobody deserves it, no family asks for it, and no one is prepared for it.
It's called Rett Syndrome, and it's the most physically disabling of the autism spectrum disorders and the leading cause of severe genetic impairment in girls, afflicting an estimated 15,000 girls and women in the United States and more than 350,000 globally. Classic Rett Syndrome affects females almost exclusively. Symptoms typically begin to appear in little girls between infancy and two years of age.
And once it strikes, it's devastating. Happy baby girls stop smiling and avoid eye contact. Gurgles and giggles go silent.
The seizures start.
Many children with Rett Syndrome end up in a wheelchair and while most victims survive well into adulthood; all require total, 24-hour-a-day care. The cost, both financial and in terms of human suffering, is enormous.
That's why local families are rallying for the seventh annual Quest for a Cure Walk-a-Thon to benefit the Rett Syndrome Research Trust. Quest for a Cure is a 1K walk-a-thon and family fun day to help raise awareness of Rett Syndrome as well as raise funds for Rett Syndrome Research.
This year's event will take place at 10 a.m. Sunday, Sept. 25, at VFW Park in Royal Oak. Activities include face painting, balloon animals, raffles, a silent auction, the1K walk and plenty of food and fun for the whole family.
For more information about RSRT, please visit http://www.reverserett.org.
To help join the fight, and provide a donation to assist RSRT put an end to Rett please click HERE.
About Rett Syndrome
The onset of Rett Syndrome in a little girl may be heralded by delayed development, or by regression and loss of acquired skills including speech and functional hand use. As the disorder progresses, symptoms may include disordered breathing, sleep disturbances, severe digestive problems, orthopedic abnormalities, anxiety, apraxia, seizures, impaired cardiac and circulatory function and Parkinsonian tremor.
There is currently no treatment beyond supportive, and often ineffective, measures such as feeding tubes, bracing, orthopedic and GI surgeries, and medications for anxiety and seizures. Even though the prevalence of Rett Syndrome equals that of Cystic Fibrosis, Huntingtons and ALS, it is vastly underfunded by comparison.
About the Rett Syndrome Research Trust
The Rett Sydrome Research Trust's (RSRT's) short-term goal is to bring novel therapeutics to clinical trials within five years. The vision of the RSRT is guided by founders and advisors who have been responsible for many of the major advances in Rett research over the past decade. The obvious and urgent question the Trust seeks to answer is whether symptoms can be reversed, and normal function restored, in people suffering with Rett Syndrome and MECP2 spectrum disorders.
It is RSRT's intention to expand beyond these initial projects as soon as resources allow. Since 2008, RSRT has awarded $36 million to research - more than any other Rett Syndrome non-profit organization in the world. Importantly, 98% of every dollar donated was channeled directly to RSRT's research program. As one of the few neurological disorders to show dramatic symptom reversal in mice, Rett Syndrome has attracted unprecedented interest from university and pharmaceutical scientists. Through innovative research and constant engagement with scientists, clinicians, industry, investors and affected families, RSRT is at the epicenter of this activity.
To learn more about this event, please contact:
Bridget MacDonald
248-766-2211
bridgemacd@gmail.com
