 2003 World Record Set: 18 days, 4 hours, 51 minutes! |
The
Mississippi River Challenge for
Please see Justin Bradford's Website and sign his guestbook - he loves to hear from everyone (Justin is Bob Bradford's grandson)! |
|
|
|
Rett
Syndrome What
Is Rett Syndrome? Americans may recognize Rett syndrome as the disorder that Julia Roberts has publicized. Julia Roberts recently spoke about Rett syndrome before Congress in 2002, covered by a well televised CNN news report or from a Rett syndrome documentary she appears in called "Silent Angels". Rett Syndrome is a debilitating neurological disorder historically believed to affect 1 in 10,000 females within the first two years of life.. Girls with Rett Syndrome appear to develop normally until 6 to 18 months of age. They then enter a period of regression, losing speech, hand skills and motor skills they had acquired. Most girls go on to develop seizures, repetitive hand movements, irregular breathing problems and a host of muscle problems.
The girls can live to adulthood, but most never regain
the ability to use their hands or ability to speak.
Muscle problems progress (sometimes rapidly) as these
girls age, and can include muscle wasting, severe scoliosis,
loss of ability to swallow, severe digestive problems,
and motor apraxia (knowing how you want to move physically,
but being unable to do so). Who Can Get Rett Syndrome? An
unusual X-linked genetic mutation
(MECP2) was recently discovered that accounts for most
Rett syndrome cases. Over
99% of those affected by Rett syndrome have no case history
in their family with Rett syndrome. Rett
syndrome testing is now available. Treatment & Prognosis There is no cure. Therapies to improve the quality of life remain elusive. The continued outcome of this disorder is a life time of full time care even for the most basic needs. Specialized equipment, surgeries and full time care from a parent or sibling become a standard part of life for these children and adults. Caretakers as well as those with Rett syndrome face a life time of dependency issues, employment issues and care. Hope
for A Brighter Future For those living with Rett Syndrome, our best hope for a future free from disabilities is through research. A great challenge lies ahead of us to understand incredibly complex disorder and develop an effective therapy to combat it. For more information on the latest news in Rett syndrome research, please see the Rett Syndrome Research Foundation. I'd Like To Support Rett Syndrome Research! We are directing all donations for Rett Syndrome research for this event to The Rett Syndrome Research Foundation (RSRF). To make a charitable gift by check or money order to support Rett Syndrome research via this fundraiser, please make payable to "Rett Syndrome Research Foundation " and mail directly to the RSRF at: The
Mississippi Challenge for Rett Syndrome and Leukodystrophy To make a credit card contribution or pledge by phone, please call the RSRF at (513) 874-3020. Donations made directly to the RSRF are tax deductible to the full extent allowed by law. Please see your tax consultant for details.
|
|
