The Rett Clinic at Children’s Hospital Colorado
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.
MULTI-DISCIPLINARY CARE IN ONE CONVENIENT PLACE
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 various 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. On each clinic day, 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.
What you need to know
Clinic sessions are hosted twice a month by Children’s Hospital Colorado. RMRA provides liaisons to families visiting the clinic.
The Clinic will serve patients with Rett Syndrome and Rett-like disorders. Each clinic serves up to 8 patients per day or 96 per year. With additional funding support, the clinic will be able to continue to provide care for these patients and their families.
The Clinic is regional by design but is open to families throughout the United States.
The Clinic will serve all patients with a positive genetic test for Rett Syndrome (Typical, Atypical, Male) and Rett-related disorders, such as CDKL5 Deficiency Disorder, FOXG1 Syndrome, MECP2 variance, and will not discriminate on the basis of age, sex or any other objective factor. We see patients for their entire life through our Rett Clinic Program.
The RMRA gift provides for a part-time registered nurse coordinator, medical director support, and some discretionary funds.
Clinic operations are funded in collaboration with RMRA, Children’s Hospital Colorado, and the International Foundation for CDKL5 Research. We are always looking for more partners to help keep our clinic in operation.
Meet the Rett Clinic’s Clinical Specialty Coordinator and Administrative Service Coordinator!
-
Tristen Dinkel, MSPC, BSN, CNRN, CPN is the Rett Clinic & Neurogenetic Multi-Disciplinary Specialty Clinic Coordinator at Children’s Hospital Colorado. Tristen has been a nurse for 16 years with experience both inpatient and outpatient Neurology. She graduated from Trinity Christian College with her Bachelors in Science of Nursing and from University of Colorado with her Masters in Science of Palliative Care. In her current roles as a nurse coordinator for two specialized clinics she helps support families in their desire for unique care along with managing and growing programs to meet their needs. She is an active member of the Association of Child Neurology Nurses, Colorado Association of Nurses for the Developmentally Disabled and the American Association of Nurse Practitioners. Her passion includes guiding families through all stages of their life and she believes in quality of life no matter the diagnosis. Tristen enjoys gardening, traveling and riding bikes with her family when she isn’t playing with kids at the hospital.
-
My name is Eleanora Rose Drake. I go by Rose, only because it is easier to remember, especially for our
kids. I started working at Children’s as a temporary worker in 2009, and became permanent in
September of 2010. I started out in the mailroom as part time, working from 10am-2pm. It was a great
experience, and a great way to meet people. Which helped me move along with growth at CHCO. I
worked in the mailroom from 2009-2012. When I got pregnant with my son is when I decided to look for
something full time. I then moved to CHCO Primary care scheduling, did that for 2 years, 2012-2014. I
then moved to central scheduling, and then they broke us apart by department. I ended up in the SIC
scheduling department, did that from 2014-2016. It was fun while it lasted, but got tire of the phones.
We took around 500 calls a week. That was exhausting, but it helped me learn a lot of different medical
terminology, and humbled me. I then moved on to the HTC, the Hemophilia-Thrombosis and Stroke
clinic, doing check in-check out. I loved it here, I really learned a lot as things were more hands on, and I
worked closely with the providers and nurses, It was a small clinic in the old UPI building, so it was like
working with family, we all became so close. As things started shifting more towards making CHCO
employees switch over to CU Medicine, it was a hard decision, and I already put in so many years. Long
story short I started looking for other positions at CHCO, and I told myself if it was meant to be I’ll find
something before the switch is supposed to happen, and boom I got blessed. Therefore, I was at the HTC
from 2016-until March 3rd of this year. I love Children’s and all the growth, and opportunities it has to
offer. I found a new part of our family tree, Neurology
Meet the Rett Clinic Team
Up to 15 specialists can meet your Rett child in one convenient visit.
Our team has developed a wealth of experience and knowledge about Rett and Rett-like disorders, and we’re recognized as national and international leaders in the field. We collaborate with other programs and practitioners from across the world, and we strive to develop and provide the most up-to-date care based on research and care guidelines.
What to expect at your appointment:
During your visit, you may see providers from the following sub-specialties:
Nutrition
Physical Therapy
Speech Therapy
Nursing
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.
Neurology
Rehabilitation
Developmental Pediatrics
Pulmonary
Cardiology
Orthopedic Surgery
Genetics
Gastroenterology
Behavioral Psychology
Location:
Children’s Hospital Colorado, 13123 E 16th Ave, Aurora, CO 80045
Contact:
For more information about the Clinic and how to attend contact Tristen Dinkel CNRN, CPN, RN, BSN, Rett Program Coordinator, Neuroscience Institute, phone: 720-777-4363, email: rettclinic@childrenscolorado.org
Patients are coming from all over the US! Check out the US map with the numbers of patients that are traveling to the Rett Clinic at Children’s Hospital Colorado from all over the US.
Details
The Clinic is open every 2nd Wednesday of the month. With a full clinic, the doctors and therapists are seeing follow up patients in the morning and new patients in the afternoon. Thank you to generous donations we are able to expand the clinic days and offer a send morning each month starting in April 2023.
Please be considerate when you make an appointment. No-shows have been a big challenge. The Rett Clinic has a back log and is only open one day per month! If you cannot make an appointment, please let us know in advance.
New Patients:
January 10th, 2024
March 13th, 2024
Follow up Patients:
January 10th, 2024
January 17th, 2024
February 14th, 2024
February 21st, 2024
March 13th, 2024
March 20th, 2024
May 8th, 2024
July 10th, 2024
April 10th, 2024
April 17th, 2024
May 8th, 2024
May 15th, 2024
September 11th, 2024
November 13t, 2024
June 12th, 2024
July 10th, 2024
July 17th, 2024
August 21st, 2024
September 11th, 2024
September 18th, 2024
October 9th, 2024
October 16th, 2024
November 13th, 2024
November 20th, 2024
December 11th, 2024
December 18th, 2024
How to help
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.
Donate today
Make a difference today to a child with Rett Syndrome.
Give hope, strength and the possibility of a cure!
In 2017 the Rett Clinic proudly accepted the CENTER OF EXCELLENCE AWARD by Gordy Rich, COO of RettSyndrome.org. Read more about this on our blog.
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).
Read what parents say about the Rett Clinic at Children’s Hospital Colorado
“On a clinic day, the family gets their own exam room to set up shop and the specialists come to you. These kids can require so many different doctors visits. But at the Rett Clinic, you can see 12 different specialists in one day. Can you imagine trying to coordinate all of those visits separately?”
-Diana Wyman Kamp
“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