April 30, 2024

You Can Still Go to Harvard: Leaving a Legacy Through Brain Donation

By Karla Dzienkowski, RLS Foundation Executive Director and Adrianna Colucci, RLS Foundation Communications and Marketing Coordinator

We all leave a legacy by imparting values to our family, friends and everyone we’ve touched in our communities. But have you considered extending your legacy to future generations scientific research? May 7 is National Brain Donation Awareness Day. Your brain is an intricate and complex network, making it an invaluable gift to research. Neuroscience advances our understanding of the nervous system and neurological disorders, including RLS. This insight may ultimately lead to developing more effective treatments and potentially a cure.

The Harvard Brain Tissue Resource Center (HBTRC) facilitates the collection and distribution of brain tissue, which is then made accessible to medical researchers. The HBTRC is one of six centers belonging to the NeuroBioBank (NBB) network, funded by the National Institutes of Health, and houses the Foundation’s tissue collection. For the past few years, the RLS Foundation has worked closely with agency leaders, including HBTRC Director Sabina Berretta, MD, to consolidate the process of proper identification of RLS brain donations. Collaboration among these organizations is essential for spreading awareness and making tissue available for distribution to RLS researchers.

Preregistration for brain donation is also available through The Brain Donor Project, a nonprofit dedicated to increasing awareness and simplifying the donation process. Tish Hevel, CEO of The Brain Donor Project, partnered with the NBB to help potential donors get connected to one of the brain banks in their network.

Though these conversations can be difficult, now may be the time to introduce the topic of brain donation to your family. Your family or next of kin will play a large part in honoring your wishes for donation, so preparation is important. Though preregistration is not required for brain donation, it can be helpful for potential donors and their families. Below are some quick talking points to help with the conversation.

• Brain donation is open to everyone, regardless of whether or not they are affected by a nervous system disorder. In fact, it is equally important for researchers to have access to brains that are not affected by a nervous system disorder. The “control” brain allows for comparison and furthers knowledge of the brain in general.
• Being an organ donor does not automatically make you a brain donor. There is a separate consent process specific to brain donation.
• Just one brain can have a massive impact, potentially providing data for hundreds of studies.
• Due to support from the federal government and foundations, there is no financial obligation to your family for the recovery, shipment, processing or distribution of a donated brain.

Whether you register through The Brain Donor Project or HBTRC, you can still go to Harvard. Let your next of kin know that you want your tissue to go to the HBTRC as part of your end-of-life planning. Provide them with the phone number to HBTRC at 1-800-BRAIN BANK (1-800-272-4622) or use their 24/7 on-call phone at 617-721-7162.

There is much to learn about how you can further your legacy through brain donation. If you have additional questions, be sure to visit the FAQ page on the HBTRC website at hbtrc.mclean.harvard.edu or The Brain Donor Project at braindonorproject.org. All registration forms are available on the website. Thank you for your consideration of leaving a gift that will have a lasting impact on the RLS and medical community.