The Rett Clinic was formed early in 2010 through a partnership between the Rocky Mountain Rett Association and the Children’s Hospital Colorado. An initial gift from RMRA has funded the establishment and initial coordination staff of the Clinic. RMRA provides ongoing funding and depends on donations to continue and expand Clinic operations.
The Rocky Mountain Clinic does not just want to discover better treatments and a cure! We are striving to change lives! Imagine having to go to a variety of doctors in different buildings, at different times, potentially even in a wheelchair… But not here at the Rett Clinic! One of our top goals when establishing this Clinic, was to provide a place where the doctors come to the patients, not the other way around. So Rett Families conveniently stay in one. But besides the convenience, we also wanted to provide a variety, a multidisciplinary clinic. For one afternoon, we bring together up to 15 sub-specialty providers and therapists to provide a comprehensive evaluation for your child. Our providers work closely together and may refer children for additional help when needed.
The Rett Clinic proudly accepted the CENTER OF EXCELLENCE AWARD by Gordy Rich, COO of RettSyndrome.org
Image: Gordy Rich, COO of Rettsyndrome.org (right) presents the award to Dr. Tim Benke, MD, PhD, Rett Clinic Medical Director and Director of Research-Neurosciences Institute (left) and Tristen Dinkel CNRN, CPN, RN, BSN, Rett Program Coordinator, Neuroscience Institute (middle).
“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.”
What to expect at your appointment:
During your visit, you may see providers from the following sub-specialties:
- Developmental Pediatrics
- Orthopedic Surgery
- Behavioral Psychology
- Physical Therapy
- Speech Therapy
- Social Work
- Occupational Therapy
- Family networking via a family luncheon, and break room with refreshments are provided by the Rocky Mountain Rett Association to help you connect with others.
What you need to know
- Clinic sessions are hosted bi-monthly by Children’s Hospital Colorado. RMRA provides a liaison to families visiting the Clinic.
- The Clinic will serve patients with Rett and their families. Each clinic serves up to 12 patients per day or 72 per year. With additional funding support, the Clinic will be expanded to accommodate more patients and potentially on a more frequent basis. Our goal is to have monthly clinics that would eventually allow us to work with close to 100 girls per year.
- The Clinic is regional by design, but is open to Rett families throughout the United States.
- The Clinic will serve all patients with a clinical diagnosis or positive test for Rett Syndrome and Rett-related disorders, such as CDKL5, FOXG1, MECP2 variance, and will not discriminate on the basis of age, sex or any other objective factor.
- The RMRA gift provides for a part-time registered nurse coordinator, medical director support, and some discretionary funds.
- Clinic operations are funded completely by RMRA. The clinic relies on individual and corporate support for its continued operations.
The Rett Clinic is open to all Rett patients throughout the US. Take a look at the map to see where the patients come from:
2017 Rett Clinic Dates:
Full Clinic: 2nd Wednesday of every odd month
Follow up Clinic: 3rd Wednesday of every even month
Children’s Hospital Colorado, 13123 E 16th Ave, Aurora, CO 80045
For more information about the Clinic and how to attend contact Tristen Dinkel CNRN, CPN, RN, BSN, Rett Program Coordinator, Neuroscience Institute, phone: 720-777-7453, email: firstname.lastname@example.org
Your donation will help maintain the Rett Clinic
- We will not be able to continue the clinic without your help and donations from our community.
- More frequent clinics could be on the horizon if we can find more voices for our patients.
- Research opportunities are underfunded. We have partnered with the International CDKL5 Foundation for these efforts. Research efforts include collaborative patient registries, biobanking and eventual clinical trials.
How to Help
Please give generously to help provide a future for patients with Rett Syndrome. You can make your designated gift online, or through the Children’s Hospital Colorado Foundation, and click Donate; please designate the Rett Clinic for your gift and RMRA as your referral! All gifts are fully tax deductible. For more information, email email@example.com.