Rett Syndrome Foundation to Host Ninth Strollathon
Non-profit organization to raise money for research treatments.
St. Louis, MO, February 07, 2016 --(PR.com)-- The International Rett Syndrome Foundation (IRSF), now known as Rettsyndrome.org, will host its ninth annual St. Louis Strollathon on Sat., May 7 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 $500,000 total has been raised from the past eight 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 $8 million nationwide for research treatments and a cure in the last ten years.
A specialty clinic recently opened in St. Louis 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 now have the opportunity to meet with several health care providers including neurology, therapy, and nutrition along with other needed specialists.
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 Syndrome 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 $35 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) 878-0868.
Each year’s event has had 500+ participants, and more than $500,000 total has been raised from the past eight 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 $8 million nationwide for research treatments and a cure in the last ten years.
A specialty clinic recently opened in St. Louis 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 now have the opportunity to meet with several health care providers including neurology, therapy, and nutrition along with other needed specialists.
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 Syndrome 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 $35 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) 878-0868.
Contact
Rett Syndrome Foundation
Rochelle Brandvein
(314) 878-0868
http://www.rettsyndrome.org
Rochelle Brandvein
(314) 878-0868
http://www.rettsyndrome.org
Contact
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