GRI Center Of Excellence
GRIN2B Foundation has partnered with Children’s Hospital Colorado in 2022 to create the first North American GRI Center of Excellence, which will begin seeing patients in May 2023. The Co-Directors of this Center are Dr. Kristen Park, Epileptologist, and Dr. Jessica Sanders, Developmental Pediatrician.
Our Center will work in partnership with Children’s Hospital Colorado’s Neurogenetics Multidisciplinary Clinic.
The GRI Center of Excellence will 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 Center of Excellence will help affected families access a team of multi-disciplinary specialists. This Center 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.
The GRI COE 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).
GRIN2B Foundation’s sponsorship makes this first North American GRI Center 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.
TO ARRANGE AN APPOINTMENT
Contact Nurse Coordinator, Ryleigh VandenBroeke at GRIClinic@childrenscolorado.org
Get Involved
GRIN2B Foundation will create a clinic advisory panel for interested GRI parents to be updated on clinic activities by the medical director. The panel will meet twice yearly and can make suggestions to the medical director who ultimately oversees the GRI COE. If you are a GRI parent interested in joining the panel, please contact donna.dunn@grin2b.com.
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. The Denver Center of Excellence can advise on which types of insurance they accept and what payment plans may be available. Please contact them directly using the link above (coming soon). GRIN2B Foundation may be able to fund travel-related expenses through our Patient Assistance Grant Program for GRIN2B Families only.
For general questions about the Center of Excellence, please contact Donna Dunn at donna.dunn@grin2b.com.