Background Statement
WHAT IS RETT SYNDROME?
Rett Syndrome is a rare genetic neurological disorder that affects 1 in 10,000 females (and even more rarely in males) and begins to display itself in missed milestones or regression at 6-18 months. Rett syndrome leads to severe impairments, affecting nearly every aspect of life: ability to speak, walk, eat and breathe easily. The hallmark of Rett syndrome is near constant repetitive hand movements while awake. Cognitive assessment in children with Rett syndrome is complicated, but we know that they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and their ability to express a wide spectrum of moods and emotions.
ABOUT RMRA
In 2005, Colorado family & friends of children with Rett Syndrome started to raise funds to support national Rett organizations-- supporting research aimed at finding a cure for Rett Syndrome and improving the quality of life for children living with Rett Syndrome. After several successful years of organizing and fundraising, Colorado Rett families and friends determined they wanted to create an organization that would allow them to better direct the investment of funds raised, while better meeting local needs. In 2009, the Rocky Mountain Rett Association was incorporated as a Colorado not for profit corporation and subsequently earned tax exempt status under tax code 501(c)3.
In 2010, a video submitted by Family Benjamin for the Sears One Billion Points Video Contest, yielded in over $400K in Sears gift cards and cash and RMRA was able to create the Rett Clinic in collaboration with the Children's Hospital Colorado.
THE RETT CLINIC AT CHILDREN'S HOSPITAL COLORADO
The Rett Clinic is truly unique in that it is a multi-disciplinary clinic where patients can see up to 15 Rett specialists in one convenient place.
In 2017 the Rett Clinic received the Center of Excellence Award by Rettsyndrome.org. RMRA funds the operational costs of $125,000/year and is asking for donations to keep offering this special clinic. Thank you!