Autism BrainNet

GRIN2B Foundation has partnered with Autism BrainNet to help collect postmortem brain tissue from people who have GRIN2B-Related Neurodevelopmental Disorder. 

GRIN2B Foundation President, Liz Marfia-Ash, shares the reasoning behind this partnership.

“Our community has experienced several unexpected and devastating losses in recent years. Previously, we did not think of GRIN2B as a disorder that could lead to fatalities. These recent losses have served as a tragic reminder that there is still so much we do not understand about the effects of GRIN2B on our loved ones. I truly wish I did not have to educate our families about brain donation, but it’s important for our community to be prepared should the worst happen. Brain donation is not going to be for everyone, but I want families to know there is a way to honor their loved ones and help provide answers for future GRIN2B families.”

Who can donate and how

Autism BrainNet accepts postmortem brain donation from people of any age with a diagnosis of autism or a genetic diagnosis such as GRIN2B. The process of brain tissue donation is simple for donor families, and Autism BrainNet provides compassionate support throughout.

• When the death of a loved one is near or has occurred, families call Autism BrainNet’s 24-hour, 7-day-a-week hotline to begin the donation process: 877-333-0999.
• Autism BrainNet then works with families and medical providers to obtain authorization and to coordinate the donation.
• A follow-up meeting is scheduled for Autism BrainNet to learn more about the donor and obtain medical, behavioral, and family information.
  There is no cost to families, and brain tissue donation will not interfere with funeral or memorial service plans.

Pre-registration is not required for donation; however, families are encouraged to download the Intent to Donate Form, and the Autism BrainNet Brain Donor Card.

For more information about the donation process, call Autism BrainNet at 877-333-0999 or email info@autismbrainnet.org.