The Koolen-de Vries Syndrome Foundtion (KdVSF) has officially partnered with Children’s Hospital of Colorado to create our very first US based Kool Clinic. Located in Aurora, Colorado USA, Kool families will have access a multi-disciplinary team beginning in April 2026. The KdVSF Kool Clinic provides families the opportunity to visit all specialists together instead of having to schedule multiple appointments for their Kool individual.
The Kool Clinic clinicians and specialists are working to gather more research on Koolen-de Vries Syndrome (KdVS) and how the condition unfolds so we can develop better standards of care for everyone affected by KdVS.
Donations made to the Koolen-de Vries Syndrome Foundation have made this Kool Clinic possible! This has been many years in the making and we are so grateful for the coordination of specialists to make this happen for our Kool community.
Kool Klinic Details
-Opening April 2026
-Kool Klinic to be open for at least three years
-Accepting four KdVS individuals each quarter
-2026 Schedule: April, June, July, September and October
-No age limit on participants
-Nurse coordinator organizes family visits
-All services covered by insurance
Meet the Team
Meet the team of clinicians coordinating and organizing our first-ever multidisciplinary clinic (aka Kool Klinic) for our community.
Megan Abbott, MD
Clinic Director, pediatric epileptologist/neurologist
Jordan Wyrwa, DO
Clinic Co-Director, physical medicine and rehabilitation
Andrea Miele, PhD
Neuropsychologist
Kaitlin Angione, PhD
Genetic Counselor
Schedule
Day 1: Assessment Day
Meet with the Neuropsychologist (up to four hours) to discuss your kool individual’s behavior and brain functioning in depth. This helps everyone understand how your individual’s brain affects their thinking, learning, memory and other cognitive functions. Part of the meeting could involve several assessments, dependent on age, that include: Bayley Scales of Infant and Toddler Development, Vineland Adaptive Behavior Scales, and WISP or WISC (Wechsler Intelligence Scales).
Day 2: Appointment Day
-Pediatric Neurologist/Epileptologist
-Genetic Counselor/Geneticist
-Therapy Team: OT, PT, Speech
-Rehabilitation Medicine: tone management, braces/orthotics, botox evaluation, leads therapy planning
-Developmental Pediatrics or Pediatric Psychology
-Special Care Pediatrics (if applicable)
For additional details or to express interest in signing up, please contact:
Nurse Coordinator, Ryleigh at [email protected]
KdVSF President Ashley Point at [email protected]
Or call 720-777-1326
Koolen-de Vries Syndrome Foundation Multidisciplinary Kool Klinic
13123 E. 16th Avenue Aurora, CO 80045
[email protected]
720-777-1326
