Why brain donation is an important contribution to the search for a cure
There is still much we don't know about the human brain and its link to disease
“The brain is like a muscle. When it is in use we feel very good. Understanding is joyous.” — Carl SaganÂ
A chance meetup last summer with a local in my community led to a slightly random conversation about brain donation.
I was discussing a genetic test I had taken to see if I had inherited Huntington’s disease from my dad. While Huntington’s had taken the lives of my dad, granddad, and great-grandmother, I would soon find out that my test for it was negative.
My friend’s mother had died from Parkinson’s disease several years ago, and while my friend didn’t think they’d develop the disease, they did want to contribute to science by donating their own brain for research. They felt a strong need to help others, particularly future generations.
When my dad was in his final days, we had looked into both brain donation and organ donation in general. Unfortunately, Dad had never expressed in writing that he wished to do so, nor did he tell any family members. We were in the middle of the COVID-19 pandemic at the time, and the Human Tissue Authority (HTA) — a government agency here in the U.K. — along with the National Health Service informed me that no such donations were being accepted anyway. I suspect that now that the pandemic has eased, policies on this may have changed.
Leaving a legacy
I would like to donate my brain for research upon my death, and some brain banks in the U.K. accept them specifically for neurodegenerative disease research. (For more information, contact the HTA or, if in the U.S., the Brain Donor Project.) Anything that might lead to a cure for Huntington’s certainly seems worth it to me.
To do so, family members must be made aware of your wishes, and donations must be specifically registered, because the process is different from organ donations for transplant.
Brain donation is a valuable resource for furthering drug research. There is still much to be known about the brain and how it works, particularly how Huntington’s affects it as the disease progresses.
There is no financial cost for families for a person to donate, and it doesn’t interfere with funeral arrangements. An open casket funeral is still possible if the brain is donated, and many religious groups support this type of donation.
A recent story in The New York Times told the story of Morrie Markoff, a man who died at the age of 110, and whose family donated his remarkable brain to research. One of the reasons was that, not only had he lived to be one of the oldest people in the U.S., he had also survived a stroke at the age of 99.
His daughter researched brain donation and thought it would be an appropriate legacy for her brilliant father.
While brain donation might be a sensitive subject in some families, it is a valuable gift for researchers. As more families choose to do it, we continue to move the needle toward finding a cure for Huntington’s disease.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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