Raising awareness and funding for Rett Syndrome research
I am racing in the Disney Princess 1/2 Marathon for my youngest daughter, Ysabel Shober, who has Rett Syndrome. She has been dealt an incredibly difficult hand in life. From when Rett became manifest in Ysabel, she has been robbed of her speech, mobility & the functional use of her hands, and contends with severe digestive challenges, seizures and apraxia. The cumulative effect at first glance is that she is one or more levels removed from how 'normal' people communicate and perceive their world. The amazing secret is that she is 100% aware, emotionally connected, and trying to get on in life despite the veil cast over her by Rett Syndrome. Her self awareness is both tragic and motivating to me - I would do anything in my power to cure her and to prevent any other soul from having to contend with this damned disorder.
If you are in a position to give to a charity, I encourage you to support the research for a cure to Rett Syndrome. The symptoms of Rett have been reversed in a laboratory setting (in mice) although there are incredible hurdles to get this to a clinical setting. Researchers have found parallel applications for compounds used to treat our girls and to treat soldiers returning from combat with nerve damage and/or traumatic brain injury. The findings from Rett Syndrome research have advanced non-Rett Neurological studies and vica-versa. My point is that the research is resource constrained, and while my focus is necessarily on Rett Syndrome, the intelligence and clinical possibilities go far beyond just Rett to a broader range of neurological research. My goal here is to build both resources and awareness. Please support us if you can.