Batten & Neurodegenerative Disease clinic
Children’s Hospital Colorado
The purpose of our clinic is to serve patients and families affected by Batten disease and other Neurodegenerative conditions. Our program’s goal is to provide world-class expertise and multi-disciplinary care to patients, through personalized plans and access to cutting-edge research on these rare genetic conditions.
THE Clinic
In 2020, after learning that Mila’s hip was coming out of the socket, we realized the need for a team of doctors and therapists with experience specifically with Batten and similar neurodegenerative diseases. We decided to launch this clinic with the hope of offering a set group of providers who know the progression of these diseases and offer the best care and treatment for them over time.
The clinic is run by neurologist/epileptologist Dr. Scott Demarest and Special Care provider Dr. Kourtney Santucci, with personal one-on-one guidance for families by nurse coordinator Tristen Dinkel. This team comes with years of experience running the successful Rett & CDKL5 Clinic.
Clinic services include consultation and evaluation for all children with a genetically diagnosed Neurodegenerative disease. By bringing together an expert team for your child’s rare condition, we feel we offer the best advice to improve your child’s quality of life while at the same time collecting important natural history data and informing families of any clinical research trials. We collaborate with other clinics across the country and the world which allows us to stay on top of the latest understandings of the diseases and available treatments. Together with families and their home-base doctors and therapists, we offer a triangle of communication and improved care both at home and at the clinic.
Families work closely with our nurse coordinator to set up the schedule for a half-day clinic. The family will see all providers needed for their child in just one visit to Colorado Children’s. Visits include Neurology and Special Care Clinic which involve a pediatrician with expertise in complex and chronic conditions and a pediatric-focused registered dietician. The day also includes Rehabilitative Medicine, Neuropsychology, and Physical, Occupational, and Speech Therapies. Additional providers can be pulled in depending on the child’s needs.
Our goal is for your child to leave with a consolidated plan of care that takes into consideration their various medical and therapy needs. We look forward to continuing to follow and get to know patients once or twice per year, though more frequent check-ins with individual providers may also be needed for adjustment of medications, attention to nutrition, etc.
Mila’s Miracle Foundation has teamed up with fellow Colorado-based Rare Sisters Batten Foundation, and together we are excited to be working with Children’s Hospital Colorado to offer our clinic to anyone with a neurodegenerative disease no matter where they live (accessibility depends on insurance agreements between states). If you’re interested in joining our clinic, you will find our contact information at the bottom of this page. We look forward to growing together!
CLINIC Providers
CLINIC LOCATION
Batten & Neurodegenerative Disease Clinic
Children’s Hospital Colorado
Anschutz Medical Campus
13123 E 16th Ave, Aurora, CO 80045
720-777-1234 | childrenscolorado.org
How to schedule a visit
Please contact the Batten & Neurodegenerative Disease Clinic at Children’s Hospital Colorado with your child’s name, birthdate, your preferred phone number, copy of your insurance card(s) and genetic testing results.
Phone: 720-777-7453
Fax: 720-478-7103 (Attn: BND Clinic)
Email: BNDP@childrenscolorado.org
Online Info Session
PROGRAM SPONSORS
