There is a Shortage of Anatomical Donation of MS Brains

There is a Shortage of Anatomical Donation of MS Brains

Make Change Happen
Multiple sclerosis damages human brains, so MS researchers often study mice brains. How can multiple sclerosis be cured or prevented without studies of human brains? Researchers need the anatomical bequests of MS brains.

Harvard Brain Tissue Resource Center

Harvard University specifically collects and studies brains (and brain tissue), including those with multiple sclerosis. The Harvard Brain Tissue Resource Center (HBRTC) accepts brains with and without disorders.

Preregistration allows the best chance of a successful donation. Time is crucial because brains must be iced within six hours of death, and transported to HBRTC within 24 hours.

The main HBRTC contains donation information on how to donate a brain to Harvard for research, offers a “tour” of the brain biobank, and provides educational material on neuroanatomy.

Anatomical donations in my city

Rochester, Minnesota, home of the Mayo Clinic, includes medical school training that uses whole body donation. I have signed up to donate. One big plus for donors, besides giving future doctors actual experience with real human bodies, is free cremation after completion. While you can still have your ashes returned to your family for burial, they also offer a group burial with other donors at no charge.

However, at the present time, they do not allow for brains to be separated for use in a biobank like the HBTRC. There are several reasons for this. First, in order to take out the brain, it requires an autopsy — a time-critical autopsy, as noted above. Then, because the integrity of the whole body could be considered compromised from one point of view, the rest of the body (incorrectly in my opinion) is deemed unacceptable for medical students.

Because the Mayo Clinic is in my hometown, it has a majority of my medical records to go along with my body. I had back surgery here when I was 12 years old (broken back). Even without my brain, the opportunity to study a spinal fusion decades later seems pretty darn valuable to me.

Why I plan to donate

My mother died last year (94 years old with dementia, but she knew me to her peaceful end). She donated her body to the Mayo Clinic, and I received her ashes and buried them a few days ago. There will be a ceremony in the spring where I will be able to meet some of the doctors who benefited from this gift. My mother’s death may save lives in the future.

This is why I also plan to donate. However, it really bothers me that there is an acute shortage of MS brains for research. I spoke to the people at HBTRC last week, and was told they had received only one or two MS brains in recent years.

Since the Mayo Clinic already has the body donation, related methodology, and the cremation process in place, it makes sense that they could collaborate with HBTRC. I plan to approach them, with the help of the HBTRC people, to work out a coordination of efforts to increase MS brain donations as soon as possible.

We have hundreds (maybe thousands) of people with diagnosed MS here in Olmsted County, my hometown. Many people have medical records at the Mayo Clinic that could contribute to a much more complete understanding of MS.

Donation value of a brain

I think my brain is worth a free cremation for my body. I also am going to encourage the use of the rest of donors’ bodies for research beyond med school training.

I am not content to just let my MS brain be disposed of for casual training for which any brain will do. The Harvard donations are shared with many researchers, not just those at Harvard.

So, I hope to make change happen at the local level for brain donations to Harvard’s biobank, and hope more MS patients will consider doing the same. Maybe the cure for MS lays in our very own brains.

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17 comments

  1. Debra Barton says:

    I want to donate mine for Multiple Sclerosis.

    You don’t give any information on how to go about it in your article.

    • Paula Hardin says:

      I will have to do another article because right now there is no one method to manage this. Leona’s comment had a link to the UCLS brain bank with information on their process. My article had links on Harvard’s process. The stumbling block to any of the brain donations is COST to would-be donors. It requires an autopsy ASAP with the brain put on ice within 6 hours of death. Autopsy’s cost $. There are protocols that must be followed exactly for the autopsy to keep the brain acceptable for donation. Harvard has information on this for pathologists.

      So in order to donate your brain for MS research, local activism will be necessary to get a local hospital on board with someone who can do the proper brain removal procedure or a local government agency that handles autopsies who will agree to cooperate.

      In my case, with the local medical school, I am going to work to persuade them to participate since it already has a whole body donation process set up that provides FREE CREMATION and a group burial place for donors. This means that the whole infrastructure to make the donation is in place. If there is no medical school in your town, it will be harder to persuade them to participate, but maybe you could change that.

      For example, maybe someone who owns a funeral home or deals with cremation would be willing to offer free cremation for the rest of the body if the local hospital or autopsy agency will follow the brain protocol.

      Reading Leona’s web site about their brain bank process, they actually provide the services of an autopsy technician to retrieve the brain locally. That is a big step in the right direction.

      Of course, I have assumed that donors are poor and funerals are expensive. However, brain donation can be done and open casket would still be possible, so if you have a burial trust or family funding for an autopsy, cremation, or burial, that makes the process much easier. Then you only have to persuade a hospital to participate with the brain removal (or whatever agency does autopsies) and work with Harvard or UCLA or perhaps others (I will search) to accept the donated brain.

  2. Asia Casanova-Cancela says:

    Dear Ms. Paula Hardin, Thank you for writing this article. I didn’t think MS patients were allowed to donate organs, this article has changed my negative outlook. I would like to donate my MS brain to help in MS research. I live in NYC who should I contact?

    • Paula Hardin says:

      I do not know the answer to where there are other specifically MS brain donation centers. I will research and write another article about the possibilities soon. Meanwhile, perhaps ask your neurologists for ideas. I am also going to contact the National MS Society since this post is getting so much response of willing and eager donors!

      • Nancy says:

        I am donating my brain. I get the MS forum magazine that always has issues like this. Johns Hopkins, in Bethesda,Maryland has their own MS center called the Mellen center. There was specific info with numbers,etc. I’m sorry I loaned my magazine out. But someone in the Mellen center could tell you and they do take brains.

        • Paula Hardin says:

          Thank you for that information! I will also have to check out the MS forum magazine; I am not sure I have been getting that. I will try to compile a list of sources on this topic.

    • Paula Hardin says:

      As I say in other replies, I don’t have those answers but am going to find out more and post another article on my research. Meanwhile, call and ask Duke and other facilities (med schools) that might be able to handle the autopsy part (preferably with FREE CREMATION for the rest of the body or use of other organs for research other than whole body) and who are willing to participate and follow the Harvard protocols.

  3. Delores Geb says:

    I’m donating my brain! This is Lyme Disease! I know they will find Spirochetes in my brain! Take it now, I can no longer move my body.

  4. Patricia says:

    I have had MS since 1990 and doing very well considering. Two years ago I had a big exacerbation Involving my brainstem and and cerebellum! Have been on DMT’s for years. $4500 a month !!! Shame on the big pharmaceuticals! We do not have the “right to die”
    or “pro-choice” here in Montana!
    I look forward to your posts. I have always wanted to donate my body for research. I have been an RN
    for over 30 yrs mainly in teaching hospitals. Have watched “harvesting”of bodies. It seems a good thing to do 😊 Thanks for jumpstarting me on this quest and Paula You are a good woman!

    • Paula Hardin says:

      Thanks. I think many people are willing to donate so we just need to kick the “make it easier” into gear. Which reminds me, we should get “brain donor” on drivers’ licenses since the 6 hour might be tighter than other organs. I’ll check and write about it.

  5. Marion Wilcken says:

    My father had MS. and donated his brain in 1991. I also have M.S. and would like to donate my brain also. I live in Clinton N.Y. Do you know of a place here?

    • Paula Hardin says:

      No, I do not know all the places that accept brain donations for people with MS. Where did your father donate his brain in 1991? Harvard is the only place I know, so far, that specifically does MS brain donation as one of their specialties. Because of all the interest in this topic, I am going to research more, but anyone can start asking local hospitals and neurologist and research online to discover what might be possible. Thankfully, with contemporary speedy transportation and procedures, in essence, if you can find a local hospital or city / county agency that will do autopsies and be willing to follow protocol, then Harvard would take brains from anywhere. Getting the brain out, the cost, and what to do with the remaining body are the sticking points for local immediate and necessary care for the brain to be viable as a research specimen. So ask locally and figure out if there is anyone or any place willing to do that or who might know some way to make it happen.

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