GRI Centers Of Excellence
The GRI Centers of Excellence work to continually advance our understanding of all GRI-gene Related Disorders (GRIA, GRID, GRIK & GRIN). Over time, our experts will research how these conditions unfold so they can develop standards of care for all those affected.
GRIN2B Foundation’s GRI Centers of Excellence will help affected families access a team of multi-disciplinary specialists. These Centers will ease the burden on families by bringing all the specialists together, instead of taking their affected loved one to multiple appointments. This saves families time and hassle, while ensuring that their medical team is kept informed and is able to work together.
Children’s Hospital Colorado
GRIN2B Foundation partnered with Children’s Hospital Colorado in 2022 to create the first North American GRI Center of Excellence, which began seeing patients in May 2023. The Director of this Center is Dr. Kristen Park, Epileptologist. This Center works in partnership with Children’s Hospital Colorado’s Neurogenetics Multidisciplinary Clinic.
The team consists of a Nurse Coordinator, Neurologist, Genetic Counselor, and Developmental Pediatrician. We will also have access to the full roster of care providers through the Neurogenetics Multidisciplinary Clinic at the Children’s Hospital Colorado (this includes Physical Therapy, Occupational Therapy, Speech Therapy, Palliative Care, Social Work and more).
Watch our video featuring the Colorado Center.
TO ARRANGE AN APPOINTMENT
Contact Nurse Coordinator, Ryleigh VandenBroeke at GRIClinic@childrenscolorado.org
Boston Children’s Hospital
The GRI Center of Excellence at Boston Children’s Hospital opens in March 2026. This Center is led by Pediatric Neurologist, Dr. Christelle Ackhar and Sr. Genetic Counseling Program Manager, Sonal Mahida.
The clinic days are held on the second Friday of each month. Each patient’s individual multidisciplinary needs are triaged based on an intake form in order to provide the most comprehensive care possible. Patients will have access to multiple other specialties including, behavioral neurology, movement disorders, neuropsychology, therapies (PT, OT, speech, feeding), physiatry/orthopedics, ophthalmology, psychiatry, social work, and others.
TO ARRANGE AN APPOINTMENT
Please contact the Center’s Clinic at GRIClinic@childrens.harvard.edu or call our clinical coordinators Natasha Massiah and Kieran Bauman at 617-355-7970 and ask to be scheduled with Dr. Christelle Achkar in the GRI-related disorders clinic.
GRIN2B Foundation’s sponsorship makes these North American GRI Centers of Excellence possible.
We provide the coordination to bring the specialists together. We hope to fund future centers either on our own or in partnership with additional patient advocacy groups. Each Center requires several months or even years to establish, as there are numerous legal, ethical and financial considerations to arrange.
Center of Excellence Goals
Give support and provide information to our network of healthcare providers, families, and individuals impacted by GRI neurodevelopmental disorders.
Research – utilize data to establish evidence-based guidelines to improve care for GRI Disorders.
Interdisciplinary and innovative care – Promote best practices for comprehensive care of individuals impacted by GRI neurodevelopmental disorders.
Unfortunately, GRIN2B Foundation is not able to fund patient care. Each Center will advise on which types of insurance they accept and what payment plans may be available. Please contact them directly using the info above. GRIN2B Foundation may be able to fund travel-related expenses through our Patient Assistance Grant Program for GRIN2B Families.
For general questions about the Center of Excellence, please contact Donna Dunn at donna.dunn@grin2b.com.