A Cure for Madeline
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Madeline has a strong desire to interact with the world around her, and she has a genuine interest in establishing communication. However, one of the most tragic aspects of this neurological condition is the apraxia. Apraxia is the inability to carry out cognitive intent. Madeline intends to move a particular way, but the neurological signal doesn't reliably get to the right muscles to move them consistently. Madeline knows what she wants to say, but she is unable to say it, gesture it, sign it, point to it, wave, or pull you in the direction of what she wants or needs. We have a little girl who is literally trapped inside her own body patiently waiting to be set free.
Madeline enjoys listening to Disney music, watching Frozen, Moana, and SING! She also loves the feel of sand in her hands, swinging, being read to, eating chicken at any hour of the day, playing in water, going for stroller rides, working hard with her teachers and therapists, and having dance parties with her siblings Emily & Jack.
Until a cure is found, our family will continue to raise awareness and critical funds for RSRT. An average of ninety-six percent of every dollar donated to RSRT goes directly to their brilliant research program.
With love, hope, and many thanks,
What is Rett Syndrome?
Rett Syndrome is serious lifelong neurological disorder that is caused by random mutations in a gene called MECP2. Diagnosed almost exclusively in girls, symptoms typically appear in toddlerhood. Many children with Rett are unable to speak, walk or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal and orthopedic issues are common.
Despite the debilitating nature of the disorder our girls are so much more than a laundry list of symptoms. Their beauty and their strength inspire and motivate us.
Rett Syndrome stands apart from other neurological disorders due to the dramatic reversibility of symptoms in animal models. Our confidence that Rett Syndrome is curable guides our every decision.
Who is RSRT?
The Rett Syndrome Research Trust (RSRT) was launched in 2008 with a singular goal: to drive the development of treatments and cures for Rett Syndrome and related MECP2 disorders. As one of the few neurological disorders to demonstrate dramatic symptom reversal in the lab, Rett Syndrome has captured the attention of the world's premiere university and pharmaceutical industry scientists. RSRT is operating at the nexus of this activity, leading and advancing the research agenda.
By funding the most Rett research worldwide, $35 million since 2008, we strive to put ourselves out of business as soon as possible.
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