With over 600 neurological diseases and much more focus on mental health it’s time to hype up the need for brain donors.
Watch https://youtu.be/4rwuNR7qQnI podcast where Jim & myself (Margie) discuss our personal Parkinson‘s journey. I’ll give you a Sneak Peak update: Jim has not progressed however, I have. We discuss what that looks like….’progression is not a positive word for us.
First watch out podcast then read the article which inspired this podcast.
This entire New Jersey family will donate their brains. Here's what inspired their promise
5:17 am EDT Jul. 21, 2023
With over 600 neurological diseases, research into the brain is more important than ever.
That's something that the Demers family of Midland Park, New Jersey, knows all too well − since a fall from a ladder 18 years ago led to their discovery of their father's Parkinson's disease.
Don Demers Sr., a retired portfolio manager and part-time handyman, can no longer speak for himself due to the degenerative neurological disorder. But he and six members of his family are making their dedication to finding a cure clear.
Demers, his wife and their five children have all arranged to donate their brains after death to help research a range of diseases, from depression and anxiety to dementia.
“There isn’t a single person that is walking today that doesn’t have a loved one that suffers from something,” said Don Demers Jr. “That’s how I look at it. If future generations don’t have to deal with Parkinson’s or Alzheimer's or depression, I just think that to me is just as important as research into cancer. It could be so impactful.”
As he was researching Parkinson’s disease, Don Jr. learned to his surprise that ticking off the organ donation box on your driver’s license doesn’t include your brain, which requires a speedy and specialized process to preserve tissue for research.
“Every time I have a conversation about brain donorship, it’s really surprising to someone when they learn it’s not [included,]” said Demers.
Demers' father worked as a portfolio manager for insurance firms in New York City for about 35 years before retiring in his late 50s. In retirement, he loved doing odd jobs around the house, including working on cars or redoing a kitchen.
“He used to always love saying to me that I know a little bit about a lot,” said Demers.
In his late 50s and mid-60s, Demers' father started a side business called “Do it All Don” to bring his handyman work to other people’s homes. One day, however, Demers, then in his mid-60s, tumbled off a ladder. After that, the family began to see a decline in his mobility.
Demers' father would soon be diagnosed with Parkinson’s disease, a condition marked in its later stages by tremors and a loss of function as muscles grow more rigid. He was put on medication, and, for the first seven years after his diagnosis, was able to live life without much disruption. He played table tennis and drove, his son recalled. To fought the disease's progression, Don Demers turned to boxing and a personal trainer.
Now, 18 years after the initial discovery of his Parkinson's, the disease has sapped most of the elder Demers' mobility and much of his ability to communicate. He still lives in his Midland Park home with his wife, with regular visits from his five children and 10 grandkids.
While meeting with a neurologist around 2015, Demers' son noticed that the medicine his father was taking, Sinemet, was about 20 years old. He was surprised a newer drug wasn't available. More brain research was needed to develop more therapies, he realized.
“She kind of planted the seed that got me interested in what was going on with the brain, which led me to Brain Donor Project,” said Demers.
Brain Donor Project
The Brain Donor Project is a nonprofit created in 2015 to support the NeuroBioBank, a repository of brain tissue and research run by the National Institutes of Health. The Florida-based Project was founded by Tish Hevel after her father died from Lewy body dementia. Her father had wanted to donate his organs, including his brain, but Hevel soon learned how difficult the process was.
Brain removal and transport need to happen within a 24-hour time period to be able to preserve the brain tissue, Hevel explained in an interview.
“Everything almost fell apart the day before he died,” said Hevel. “It was really upsetting.”
Inspired by the experience, Hevel got to work creating the nonprofit, to make it easier for brain donors to sign up. Some 19,000 people have signed up through the Brain Donor Project since its inception, she said.
At the end of life, people are thinking, ‘Who is going to get my stuff? Who is going to get my money?' Scientists will argue that we’re not really considering the most precious gift we have to give.
Tish Hevel, founder and CEO of the Brain Donor Project
When Don Sr. learned about the Brain Donor Project through his son, he decided to donate his own brain to science after his death. But it wasn't just Demers: his wife and five children also signed up.
“My father was into it since he saw it as a sacrifice,” his son said. “He wanted to donate his brain so that he could potentially help his grandkids or his own kids.”
Although Demers' father is not able to communicate now, he was “all for it” when he heard of his wife and five children's desire to donate their brains after death in his honor, said Demers.
“In his day-to-day job, he was a researcher,” said Demers. “He loved the idea that his brain will be researched by other researchers.”
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One thing that struck the younger Demers during his research, he said, is how much good one donation can do. Tissue from one brain alone can be sent to over a hundred different researchers. It’s just as important for those with healthy brains to donate as it is for people with neurological diseases such as Alzheimer's or Parkinson’s, he added.
“In the last 20 years, people are starting to focus on mental health and brain health,” said Don Jr. “I think people are a lot more aware of how debilitating some of these neurological diseases can be not just to a patient, but to a family and a community.”
How to donate a brain
Although many people sign up to become organ donors, Hevel said that less than 10% of people die in such a way that allows for organs to be donated. A person must be declared brain dead but still have functioning organs, likely because they are on a ventilator.
But almost anyone can be a brain donor, she said. Once her organization is notified of a donor's death by a surviving family member, the nonprofit contacts those responsible for removing brain tissue and delivering it to an organ bank.
Donating a brain comes at no cost to surviving family members, she noted.
“The way I look at it is the more people who are donating their brain, it’s going to create jobs for researchers,” said Demers. “It increases the industry. The more we can give them the material that they need, that will grow research.”
Hevel feels it’s important to get the word out about brain donation so that people will consider how much of a need it truly is. A healthy brain donation is just as important as brain donations that had a neurological disease, as researchers need healthy brains in control groups during their research, said Hevel.
“It’s so funny at the end of life, people are thinking, ‘Who is going to get my stuff? Who is going to get my money?'’" Hevel said. "Scientists will argue that we’re not really considering the most precious gift we have to give."