Imagine the symptoms of autism, cerebral palsy, Parkinson's, epilepsy and anxiety disorders all in one little girl. Our family does not have to imagine this. We live it every day. Our 5-year-old daughter Emma suffers from a rare disorder, affecting mainly girls, called Rett syndrome.
Rett syndrome is the most physically disabling of the autism-spectrum disorders; however, it is the only autism-spectrum disorder with a known genetic cause. Primarily affecting little girls, Rett syndrome often strikes just after they have learned to walk and say a few words, and begins to drag their development backward.
Currently there are no effective treatments for Rett syndrome. Most girls survive into adulthood and require total, 24-hour-a-day care.
In 2007, the journal Science published the work of Adrian Bird, Ph.D., demonstrating the reversal of Rett syndrome in mature mouse models with late-stage disease. Only days away from death, these animals recovered normal function and became indistinguishable from healthy mice in a matter of weeks. This singular achievement has catapulted Rett into new realms of possibility and positions Rett syndrome to be the first curable childhood neurological disorder. Rett syndrome, unlike so many disorders (autism, Alzheimer's, Parkinson, MS, etc.) has unique advantages: a known cause (a single gene), excellent animal models that faithfully mimic the human disorder, the prospect of reversibility and fast-paced research progress in the last few years.
Private funding is essential to bridge the "valley of death." This is the funding gap between where government funding of basic science leaves off and pharmaceutical funding of late-stage drug development begins. There are clear treatment approaches that are currently being explored. The ideas, people and projects are in place. Funding is needed to execute this critical work.
On September 24th from 11 - 7, Rockin for Rett 3.0 - Rock the Stalks at Tucker Farms in Gabriels - will be the culminating event of months of planning. Eight soloists and bands will be playing, starting at noon. Bands from the Tri Lakes area as well as from White Plains, Vermont and Cornwall, Ontario have graciously donated their time and talent in our quest for a cure.
http://www.girlpower2cure.org/rockinforrett/emma3.aspx
Food vendors will include Smokey's 911 BBQ and North Country Kettle Corn. There will be a silent auction, basket raffle, Chinese Auction and bake sale and Pie Auction to benefit Girl Power 2 Cure, The Rett Syndrome Center at Montefiore Medical Center in the Bronx and the Rett Syndrome Research Trust. Guests will be able to experience the Great Adirondack Corn Maze as well as farm tours. (An extra charge applies.)
For more info on "Rockin for Rett" please contact
Jen Dalton
Mother’s Advisory Board Member – Girl Power 2 Cure
dalton.jen@gmail.com
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