One of RMRA’s main tasks is to maintain the Rett Clinic at Children’s Hospital Colorado. Convenience is one of our top goals, so our Rett Clinic is a place where the doctors come to the patients, not the other way around. Rett Families conveniently stay in one. But variety is also important, so our Rett Clinic is a multidisciplinary clinic. For one afternoon, we bring together up to 15 sub-specialty providers and therapists to offer a comprehensive evaluation for your child.
"The Rett Clinic was a well-oiled machine, where doctors, therapists, nutritionists, social workers and nurses gave suggestions on how to improve Tatum's quality of life."
-Tania Moore
Rocky Mountain Rett Association is an organization serving the Rocky Mountain region dedicated to improving the quality of life for children and their families impacted by Rett Syndrome. We achieve this by providing supportive services and resources to children and their families, engaging in advocacy, education and awareness efforts, and raising funds to support the search for a cure and improved treatment options.
TESTIMONIAL
"The Rett Clinic was a well-oiled machine, where doctors, therapists, nutritionists, social workers and nurses gave suggestions on how to improve Tatum's quality of life."-Tania Moore, Rett parent
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!
Organization name
Rocky Mountain Rett Association
other names
RMRA
2009
Tax id (EIN)
26-4698552
Category
Diseases, Disorders & Medical Disciplines, Human Services, Health Care, Medical Research
Organization Size
Medium Organization
Address
P.O. Box 1294Jefferson County, CO, US