Rett Syndrome To Host Eighth Strollathon

ST. LOUIS - Jan. 27, 2015 - PRLog -- The International Rett Syndrome Foundation (IRSF), now known as Rettsyndrome.org, will host its eighth annual St. Louis Strollathon on Sat., May 2 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 $425,000 total has been raised from the past seven walks.  Last year a record 25 Strollathons took place throughout the country and raised $1 million for the foundation, making the fundraising effort’s grand total of nearly $8 million nationwide for research treatments and a cure for the last seven 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 Saint 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.  For more information, call Strollathon chair Joyce Opinsky at (314) 878-0868, e-mail her at stlstrollathon@gmail.com, or visit the organization’s web site at www.rettsyndrome.org.