Tissue Donation

When a patient with STXBP1 Related Disorders (STXBP1-RD) passes away, their experience can help researchers learn more about this devastating disease. STXBP1 Foundation encourages families to reach out to the University of Maryland Brain and Tissue Bank, which collects donations of brain and tissue to help advance research.

We understand that tissue donation occurs at a particularly emotional time for loved ones and that it is a personal and difficult decision that will not be right for everyone. By making this generous donation, you improve the chances of finding a cure and better treatment options for these diseases. STXBP1 Foundation applauds the American Epilepsy Society’s SUDEP guidelines, and joins other advocacy organizations in urging expanded surveillance, research, and education.

University of Maryland Brain and Tissue Bank

The mission of the UMB Brain and Tissue Bank (UMBTB) is to advance medical research surrounding nervous system disorders, including developmental, neurologic, psychiatric, and movement disorders. We do this by collecting and distributing post-mortem tissues across the US and around the world. Ultimately, the UMBTB’s goal is to contribute to the understanding, care, and treatment of various disorders through medical research.

The UMBTB is part of the National Institutes of Health (NIH) NeuroBioBank network. Learn more about this program here.

Please reach out to research@stxbp1disorders.org if you would like to talk with one of our research family support members.

Resources

These two videos provide information for family on brain donation from our partners at DEE-P Connections.

Why Brain Tissue Donation Matters

https://deepconnections.net/2022/06/27/why-brain-tissue-donation-matters/