Rett Syndrome Foundation to Host 10th Strollathon

Press Release (ePRNews.com) - St. Louis, MO - Feb 22, 2017 - The International Rett Syndrome Foundation (IRSF), now known as Rettsyndrome.org, will host its 10th annual St. Louis Strollathon on Sat., May 6 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 Tilles Park’s Gloria Rodgers Shelter located at 9551 Litzsinger Rd. in Ladue, 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 $550,000 total has been raised from the past nine walks.  The Strollathon program, Rettsyndrome.org’s national 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 $10 million nationwide for research treatments and a cure in the last 13 years.

St. Louis features a specialty clinic to care for and support children with Rett syndrome and Rett-related disorders.  The clinic, a collaboration between Washington University School of Medicine and St. Louis Children’s Hospital, was named one of 14 Rett syndrome clinical research centers of excellence.  The clinic features 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.

The gene that causes Rett syndrome was discovered in 1999 and, in 2007, research proved the theory of reversibility in mice.  Human clinical trials began in Boston in 2010 to improve and possibly reverse the disorder’s progression.  Research is currently focusing on multiple disease-modifying human clinical trials.

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.

Source : Joyce Opinsky

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