To enable cutting-edge Huntington’s disease research, HDSA is collaborating with CHDI to support the donation of brain and other organs from HD families. A brain donation is an extraordinary gift in the name of science and medicine that can contribute to the greater knowledge and the greater good of the HD community.

This new program, called HD Legacy, encourages the donation of brain and other tissues from HD gene carriers, at-risk individuals, and healthy family members. The Harvard Brain Tissue Resource Center (HBTRC) will assist interested families throughout the process. Families will bear no costs associated with the donation, all conversations are confidential, and the commitment is non-binding.

Brain donation is a very personal decision. To learn more you can call the HBTRC at 1-800-272-4622 or visit the HBTRC website. You can also view a printable postcard with step-by-step instructions and frequently asked questions.

 

Research Survey about Apathy in HD

One often-overlooked symptom of HD is apathy, a lack of motivation or initiative for daily activities. Researchers from Monash University in Australia are studying apathy and are conducting two surveys, one for individuals with the HD gene, and one for caregivers or family members. All current HDSA-approved research surveys can be found on the survey page of our website. If you are interested in participating in the apathy survey, the links are below.

If you are HD gene positive, please complete the HD Participant Questionnaire.

If you are a partner or caregiver, please complete the HD Partner Questionnaire.

You may contact doctoral student Kelly Atkins, Kelly.atkins@monash.edu,with questions about this research.

 

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