GRIN2B Foundation is thrilled to launch the first North American GRI Center of Excellence at the Children’s Hospital Colorado. 

The GRI Center of Excellence will work to continually advance understanding of all GRI-gene Related Disorders (GRIA, GRID, GRIK & GRIN genes). Over time, our experts will research how these conditions unfold so they can develop standards of care for all those affected.

PURPOSE OF THE CENTER

This GRI Center of Excellence will help affected families access a team of multi-disciplinary specialists. The Center will ease the burden on families by bringing all the specialists together, instead of taking their affected loved one to multiple appointments. Children’s Hospital Colorado’s services include consultation and evaluation for individuals of all ages attending the clinic. Their expert providers will ensure patients are receiving the needed therapies, treatments, and services to support the best possible quality of life. Additionally, they will work to participate in natural history data collection and ground-breaking clinical research trials, as well as collaborating with providers across the country and the world. Children’s Colorado’s hope is to work with families and their primary medical team to create a care plan that places the patient’s needs at the center of care.

GRIN2B Foundation Vice President and Nurse Practitioner, Donna Dunn, has been integral in the development of this Center.  “We are so excited to be part of this GRI Center of Excellence. The GRIN2B Foundation has worked tirelessly for over two years to provide this service for our families. Patients attending this center will have access to state of the art care by healthcare providers in the field. I look forward to seeing this service grow and be able to serve more families. Thank you GRIN2B Foundation and Children’s of Colorado!” – Donna Dunn, GF Vice President

Our GRI Center of Excellence team is led by Pediatric Epileptologist, Dr. Kristen Park and Developmental Pediatrician, Dr. Jessica Sanders, and includes a Nurse Coordinator and Genetic Counselor. We will also have access to the full roster of care providers through the Neurogenetics Multidisciplinary Clinic at Children’s Hospital Colorado (this includes Physical Therapy, Occupational Therapy, Speech Therapy, Palliative Care, Social Work and more).

“This first-of-its-kind GRI Center of Excellence will allow us to accelerate our research, develop standards of care, and provide unparalleled comprehensive and holistic care for children with GRI disorders and their families. We are immensely grateful to the GRIN2B Foundation for their incredible partnership and support.” – GRI COE Director, Dr. Kristen Park

In 2023, the Denver GRI Center of Excellence will host two full clinic days – May 19th and November 17th. Starting in 2024, the Center will see patients 4 half days per year. To schedule an appointment, please contact the Center’s 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.

While we work hard to promote research that develops treatments and cures for GRIN2B, we can do a great deal right now to enhance the quality of life for all those with GRIN2B and related GRI genetic disorders by funding this Center of Excellence in Colorado. 

GRIN2B Foundation hopes 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.

Consider making a DONATION today to help support the GRI Center of Excellence.

For general questions about the Center, please contact Nurse Coordinator Ryleigh VandenBroeke at GRIClinic@childrenscolorado.org or Donna Dunn at donna.dunn@grin2b.com.

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The GRI Center of Excellence has partnered with the RARE Bear program, a grassroots community-driven outreach program for kids with rare disease. Community volunteers create one-of-a-kind teddy bears for one-of-a-kind “rare” kids. Each patient who visits the GRI COE will be gifted with their own “Rare” Bear.