‍Advancing research, honoring loved ones with the gift of brain donation‍

Syngap Research Fund has partnered with Autism BrainNet to help collect postmortem brain tissue from people who have SYNGAP1. Autism BrainNet collects, processes, stores, and then distributes collected donations as requested to qualified researchers worldwide.

“Postmortem brain tissue is precious.  It can help researchers understand how to help all the patients still living with the disease of SYNGAP1” says Mike Graglia, managing director of SRF. “I hate to think of my son’s passing and hope he will outlive me, but I have registered him for this donation, we all should do what we can to help science tackle this disease.  We are fortunate that the Simons Foundation supports ABN and that their professional, caring and capable team are here to support our families and then steward the tissue samples.  Their generous support is a gift to the community.”

Why ABN is so remarkable

What is so precious about the ABN partnership is that they keep SRF in the conversation as tissue samples are requested. For us, this was a very compelling part of the partnership. As requests are made to ABN for SYNGAP1 tissue, SRF will be notified and our SAB will have the opportunity to give feedback to them about the project and researchers. Furthermore, we will be aware of who is doing what with our disease. We did not find any other brain donation partner that does the same.

ABN has an impressive list of partners. They have aligned their procedures with the NIH NeuroBioBank and work with the Autism Science Foundation. Furthermore, they partner with six other family groups whom SRF respects and works with.

‍Who can donate and how

‍Autism BrainNet accepts postmortem brain donation from people of any age that have a diagnosis of autism or a genetic diagnosis such as SYNGAP1. 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 consent and to coordinate the donation.
• A follow-up meeting is scheduled for Autism BrainNet to learn more about the donor and to 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 Postmortem, Brain Tissue for Research information sheet and the Autism BrainNet Brain Donor Card, both available on the Autism BrainNet’s Donor Resources page.

For more information about the donation process, contact the Autism BrainNet at 877-333-0999 or info@autismbrainnet.org. You can also contact Mike Graglia at mike@syngapresearchfund.org to discuss further.