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Event Date: Event Name: Category:
2018-05-05
9 AM - 1 PM
Rett Syndrome Foundation's 11th Annual Strollathon Fund Raisers / Galas
Event Description:
The International Rett Syndrome Foundation (IRSF), now known as Rettsyndrome.org, will host its 11th annual St. Louis Strollathon on Sat., May 5 with registration starting at 9 a.m. and the walk beginning at 10 a.m. The one-mile family-friendly stroll, which will be held at the JCC-St. Louis located at 2 Millstone Campus Dr., includes a visit from Fredbird, entertainment and food. All proceeds will benefit Rett Syndrome research.

Each year’s event has had 500+ participants, and more than $600,000 total has been raised from the past 10 walks. The Strollathon program, Rettsyndrome.org’s signature fundraising event, has brought families together to fundraise and to strengthen the local Rett community since 2004. Strollathons have raised a grand total of nearly $12 million nationwide for research treatments and a cure in the last 14 years.

St. Louis features a specialty clinic to care for and support children with Rett Syndrome and Rett-related disorders. The clinic is a collaboration between Washington University School of Medicine and St. Louis Children’s Hospital. Patients and their families have the opportunity to meet with several health care providers including neurology, therapy, and nutrition along with other needed specialists. The clinic – which was named one of 14 Rett syndrome clinical research centers of excellence – has a team of specialists with substantial experience in the diagnostic evaluation and treatment of individuals with Rett syndrome. By partnering with families and community healthcare providers, the clinic delivers care that is comprehensive and appropriate for a family’s individual needs.

Rett syndrome is a genetic neurological disorder that occurs almost exclusively in females and becomes apparent after 6-18 months of early normal development. It results in a regression that leads to lifelong impairments. Those inflicted with this disorder have multiple dysfunctions: speech is lost, seizures develop and scoliosis occurs, many develop irregular breathing patterns, and more than half of the girls and women lose their ability to walk. Those diagnosed with Rett require maximum assistance with even the most basic daily activities. The hallmark sign of Rett syndrome is near constant repetitive hand movements while awake.

Since the discovery of the gene that causes Rett syndrome in 1999, as well as research that provides the theory of reversibility in mice in 2007, there is now an unprecedented and historic opportunity to fund crucial new research. Rett syndrome is the only autism-spectrum disorder with a known genetic cause. It is often characterized as a “Rosetta Stone,” a key that will help unlock treatments and cures for other disorders including autism, schizophrenia, Parkinson’s, anxiety, and autonomic nervous system disorders.

Rettsyndrome.org is currently funding various clinical trials that are showing very promising results. 2018 is expected to see the first FDA approved Phase 3 Clinical Trial for Rett syndrome.

Rettsyndrome.org is the world’s leading private, non-profit organization that has funded more than $40 million for research to date.

Donations are appreciated to the Strollathon, which is free and open to the public. For more information, call Strollathon chair Joyce Opinsky at (314) 346-1323, e-mail her at stlstrollathon@gmail.com, or visit the organization’s web site at http://www.rettsyndrome.org.
Additional Event Information
Family Friendly: Yes
Handicapped Accessible: Yes
Location: JCC at 2 Millstone Campus Dr.
Price: Free and donations are appreciated.
Contact Joyce Opinsky
Event Sponsor: Rett Syndrome Foundation
Contact Phone: 3143461323
Contact Website: http://www.rettsyndrome.org
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