Rett Syndrome Research Trust
Making Rett History
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, $66 million since 2008, we strive to put ourselves out of business as soon as possible.
RECENTLY DIAGNOSED
Getting a Rett syndrome diagnosis is one of the hardest things you’ll ever face. We know this first-hand at RSRT. We’re parents too. Emotions can run the gamut and it can all seem overwhelming. You’re worried about your child and your family and what the future will look like. You are reading everything you can get your hands on but you are not sure how to interpret it or if it’s relevant.
You are not alone. We are here to help you make sense of all the information, to listen, to answer questions, to help you navigate the emotions you are experiencing, and, very importantly, to give you tangible reasons for optimism.
REASONS FOR OPTIMISM
Rett syndrome is challenging, for our children who have it first and foremost, but also for parents and all family members. We want you to know these facts that give us optimism, strength, and confidence about today and the future:
Rett syndrome can never take away the immense love we have for our children. No diagnosis could ever do that. Our children with Rett return that love to us in the most profound ways.
Research has made exciting progress. The mutated gene that causes Rett is known, so scientists have a target to attack. Rett is not neurodegenerative so brain cells don’t die. Remarkably, Rett has been reversed in animal models of the disease.
Many families are relieved to get the diagnosis. Uncertainty is replaced with a sense of empowerment that you can now get involved and help push the research forward.
There is a wonderfully supportive Rett community of fellow parents and family members. We can help introduce you to them.
We are part of your team. At RSRT we fight every hour of every day for your child and ours. Our goal is a cure, and we won’t rest until we achieve it.
WHAT DO I DO FIRST?
Please register with us. It takes only a minute. This will give you access to RSRT research updates, and information about webinars and other activities. If you are a parent or relative of a child with Rett you’ll be subscribed to RSRT’s e-newsletter for families.
WHAT DO I DO SECOND?
Email or call Monica Coenraads, RSRT’s Founder and CEO. Monica has a daughter with Rett and can answer your questions about the disorder and the research. If you wish, Monica can also connect you with other families in your area or with children of the same age. You are not alone, and Monica can be an important resource.
Monica Coenraads, | [email protected] | 203.445.0041