On April 22, 2011 our world was turned upside down. On this day while sitting in the neurologists office with our youngest daughter Emelia, the doctor described to us the possilbility of a debilitating disease, Rett Syndrome. Two months later our worst fears were confirmed, Emelia had tested positive.
Rett Syndrome is a severe neurological disorder. Primarily affecting little girls, Rett often strikes just after they have learned to walk and say a few words, and begins to drag their development backward. Symptoms include: loss of speech and motor control, compulsive hand movements and loss of functional use of the hands, severe digestive problems, scoliosis and fragile bones, seizures, impaired cardiac and circulatory function and Parkinsonian tremors. Currently there are no effective treatments for Rett but we plan on changing that!
Emelia will be turning 3 on August 21, 2011 and what better gift could we give this courageous little girl than the gift of HOPE! We decided to start a fundraising effort to support the Rett Syndrome Research Trust. The Rett Syndrome Research Trust has one mission: to fund research for a cure. In 2007, RSRT Trustee and Scientific Advisor, Adrian Bird, dramatically reversed Rett Syndrome symptoms in mice. In the wake of this dramatic and unexpected reversal, RSRT developed a single focus - to make Rett Syndrome the first reversible brain disorder.
We believe passionately that Rett Syndrome is reversible. The scientists, ideas, and technologies are in place, the next steps are clearly defined. The speed of success will, in large part, be dictated by the magnitude of financial investments in high quality research. Rett Syndrome receives no government funding for research at this time - it is up to families and individuals to raise the money to support these efforts. 98% of every dollar goes directly toward research efforts.
Donating through this website is simple, fast and totally secure. It is also the most efficient way to support our fundraising efforts.
Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!