Dr. Crystal M. Glover and staff from the UCI ADRC Brain Donation Program provide educational outreach to K-12 volunteers at the Alzheimer’s Association.
Recently, Penn Holderness, a well-known YouTuber and author, shared a touching tribute to his late mother in which he discussed her “final gift” to Alzheimer’s disease research. Penn’s mother had lived with Alzheimer’s disease and had participated in an observational study at the Duke Alzheimer’s Disease Research Center (ADRC). As part of her research participation, his mom donated her brain to be autopsied after her passing. Penn’s viral video highlights the important contributions of families like his towards advancing our science – where we are working to develop a cure for Alzheimer’s together.
Brain autopsy is one of the most important contributions to research for Alzheimer’s and other types of dementia. Researchers have made incredible strides in the past two decades, including developing biomarkers like blood tests or brain imaging with PET or MRI scans. All of these, however, originate with autopsy studies to understand brain changes.
When linked to longitudinal clinical data from a research volunteer, brain donation can uncover how dementia develops and progresses, what may cause or place a person at risk, how someone may be protected from dementia, and much more. As Penn suggested in a follow up interview, his mother’s brain and the data she contributed will add to a national research repository that can be shared with scientists to help better understand, diagnose, treat, and hopefully cure Alzheimer’s.
Like Duke, UCI MIND is home to a NIH-designated ADRC with a recognized brain donation program. In the time since the UCI ADRC was established 40 years ago, approximately 1200 volunteers have graciously consented to donate their brains upon death and their loved ones have carried out their wishes. These volunteers agreed to allow us to share their brain tissue and other data and, so far, we have sent samples to over 119 institutions, in addition to many investigators here at UCI. Countless discoveries have been made and continue to be made! We also proudly serve as home to the one of the most robust brain donation programs in the country for people with Down syndrome, who are at increased risk of developing Alzheimer’s.
Why is it important to have so many brain donation programs around the country and require so many study volunteers? While Alzheimer’s does not discriminate, it may not affect everyone in the same way or look the same in every person. Research has shown that women, persons from minoritized groups, and those from more disadvantaged or under resourced neighborhoods may be at greater risk of developing dementia, but we are not entirely sure why. Brain donation may help fill these gaps in knowledge.
Researchers at UCI MIND are committed to raising awareness about brain donation and increasing the number and type of brain donors for research. We provide information on what brain donation is and aim to better understand how people make decisions about brain donation. We contribute best practices and serve as a resource to other ADRCs across the United States. Most importantly, we always handle brain tissue and the donation process with respect and gratitude.
An ancient Greek proverb says, “A society grows great when old men plant trees in whose shade they shall never sit.” Brain donation is a seed for research and a lasting gift.
For more information about the brain donation program at UCI MIND, please contact: 949-824-0008 or research@mind.uci.edu
