Tissue Donation

How can I get involved?

Tissue donation is an extremely personal and private decision. The donation of brain and other tissues is a precious gift that helps to advance meaningful research to find a cure. Donating tissue does not interfere with open casket viewing. There is no financial cost to the family, and the family can reconsider the decision at any time.

To learn more please contact our Director of Family Services, Diana Jussila (formerly Pangonis) via email diana@ntsad.org. Alternatively, you can contact the following to donate frozen and/or paraffin tissue samples:

The UMB Brain and Tissue Bank
University of Maryland School of Medicine
Department of Pediatrics

655 W. Baltimore Street, 13-013 BRB
Baltimore, MD 21201-1559

Phone: 1-800-847-1539 or 410-706-1755
Fax: 410-706-2128


Funding Research

You do not have to participate in a study to be involved with research. Raising money for research is a vital way for research to continue moving forward.

We Care for Rare

Facu y Giuli
Juvenile Tay-Sachs Disease

“Facu (12) y Giuli (16) ellos aman viajar y divertirse en familia”

Alejandra Saipert, Madre