New York, NY (June 20, 2019) – In response to a growing need to study exactly what Huntington’s disease (HD) does to the human brain, the Huntington’s Disease Society of America (HDSA) and CHDI Foundation are pleased to announce a new collaboration called HD LEGACY to support brain and other organ donations from families affected by HD who would like to make a vital contribution to research.  

This new program encourages the donation of brain and other tissues from HD gene-expansion carriers, at-risk individuals, and healthy family controls.  The Harvard Brain Tissue Resource Center (HBTRC) will assist interested families throughout the process, and families will bear no costs associated with the donation. To learn more you can call the HBTRC at 1-800-272-4622, visit the HBTRC website, or click here.

“The decision to donate one’s body to science is an amazingly selfless act,” said Louise Vetter, President and CEO at HDSA.   “Participating in HD LEGACY is truly a gift for future generations.  The brains and other organs donated through this program will leave a ‘legacy’ of hope, inspiring new knowledge that will someday stop HD in its tracks.”

“Science still has a quite rudimentary understanding of how the human brain works,” said Robi Blumenstein, President of CHDI Management, Inc. “Researchers need more brain donations from HD-affected individuals to better understand how HD affects the human brain, what happens to the different cell types and circuits that make up the brain over time. HD LEGACY will give us new insight into how to intervene therapeutically.”

Sabina Berretta, MD, Director of the HBTRC added “As an investigator on the pathophysiology of brain disorders, I am infinitely grateful to all brain donors and their families for the precious gift they entrust to us. A brain donation truly is a ‘gift of knowledge’ to the research community and, more broadly, to our society. Investigations on the human brain open a unique window into the changes that occur at the cellular and molecular level, which is an essential step toward effective therapeutic interventions. The HBTRC is proud to partner with CHDI and HDSA to support tissue donations from families affected by HD”.

HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes HD. Today, there are over 33,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are sometimes described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The decision to participate in HD LEGACY is an intensely personal one. All discussions with the Harvard Brain Tissue Resource Center are strictly confidential and registration in the program is non-binding.

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The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD.  From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.  To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit or call 1-800-345-HDSA.

CHDI Foundation, Inc., is a privately funded nonprofit biomedical research organization that is exclusively dedicated to rapidly developing therapies that substantially improve the lives of those affected by Huntington’s disease. As a collaborative enabler, CHDI seeks to bring the right partners together to identify and address critical scientific issues and move drug candidates to clinical evaluation as quickly as possible. CHDI scientists work closely with a network of more than 700 researchers in academic and industrial laboratories and clinical sites around the world in the pursuit of these novel therapies, providing strategic scientific direction to ensure that our common goals remain in focus. More information about CHDI can be found at