GRIN2B Foundation is thrilled to launch the second North American GRI Center of Excellence at Boston Children’s Hospital.
The Boston GRI Center of Excellence will work in partnership with the Denver Center 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.
The first inaugural clinic will be held on Friday, March 13th and the clinic will be held on the second Friday of each month going forward. Each patient’s individual multidisciplinary needs will be triaged based on an intake form in order to provide the most comprehensive care possible. The team 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. They 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.
The Boston GRI Center of Excellence team is led by Pediatric Neurologist, Dr. Christelle Moufawad El Achkar and Senior Genetic Counselor Sonal Mahida and includes Research Coordinator, Helen Olson.
GRIN2B Foundation Vice President and Nurse Practitioner, Donna Dunn, has been integral in the development of this Center. “We are beyond excited to celebrate the opening of our second GRI Center of Excellence in Boston. Watching this vision grow from our first clinic in Denver to now expanding across the country is incredibly meaningful for our families. The GRIN2B Foundation has worked tirelessly to build strong partnerships and create access to expert, coordinated care for individuals living with GRIN2B and GRI Disorders. Knowing that more families will now have access to specialized, state-of-the-art support gives us so much hope. We are deeply grateful to the teams in both Denver and Boston who are helping turn this mission into reality, and we look forward to continuing to grow this network of care together.” – Donna Dunn, GF Vice President
To schedule an appointment, please contact the Center’s Clinic at GRIClinic@childrens.harvard.edu or call the 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.
For more information on the Boston Center and to meet the staff, we will schedule a webinar in April.
Dr. Ackhar and Sonal Mahida will also be presenting at our July GRIN2B Family & Research Weekend.
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 these Centers of Excellence.
GRIN2B Foundation hopes to fund additional centers across the United States 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.