In this country and for many, this is a topic that people like to “skirt around”. In my opinion, however, the topic is important, and if earlier generations had also thought consciously, I would perhaps now be in a better situation than I am. Thoughts like “what do I get out of this?” are perhaps out of place and too short-sighted in this case. Brain donations help researchers study brain diseases such as multisystem atrophy, Alzheimer’s disease and related dementias that affect millions of people.
Why do people donate their brains and why should I?
Our brains are amazing networks that help us think, love or breathe. But sometimes things go wrong and our brains don’t do what they should. By studying the brains of people who have died – both those who had a disorder and those who were healthy while alive – researchers are learning more about how these disorders develop and how we can better treat or prevent them. Donating a brain offers the opportunity to help researchers better understand these disorders and develop something to treat them for future generations.
While many people think they automatically donate their brain when they sign up to be an organ donor, the process of brain donation is different. Instead of helping to keep others alive, as with kidney donation, brain donation helps to advance scientific research. A donated brain can have a huge impact and potentially provide information for hundreds of studies – especially for a condition as rare as our disease. However, many brains from different populations and age groups are needed to help researchers explore the causes of disease and develop more effective therapies that can then be widely applied.
For some, the primary motivation is to help scientists discover new treatments and preventive measures. For others, the motivation is to have a positive impact on their community and. Or simply, one wants to get to a drug faster that will spare future generations this suffering we are going through. Sometimes relatives want to know with certainty whether their loved one had a particular disease. Currently, only examination of the brain under a microscope, after death, provides a complete diagnosis and absolute certainty.
A significant advantage of brain donation often gives comfort to the bereaved and also to the patient himself. Although they have lost a loved one, bereaved families are comforted by the knowledge that this act can have a far-reaching, positive impact on public health, research and well-being in the years to come.
“I didn’t expect to benefit, other than my family being better informed, but my participation in brain donation can help future generations tremendously” – says one patient, and that’s a sublime feeling of making a good difference.
Whatever the reasons, one thing is true for all: brain donation is a generous gift. Researchers use donated brain tissue to study brain diseases that affect millions of people and include Alzheimer’s disease, Lewy body dementia, Atypical Parkinson’s Syndromes such as MSA also, frontotemporal disorders, dementia, Idiopathic Parkinson’s, Huntington’s disease, and brain injuries such as trauma and stroke.
Researchers learn the most from the brains of people who have participated in studies during their lifetimes. This allows researchers to track changes in memory, thinking, language and behavior over time and gather information about environmental and biological factors. The more researchers know about a brain donor, the more they can learn about the relationships between cognitive test results, biomarkers such as blood tests and brain scans, and changes detected in the tissue. All of this information will help them gain a better understanding of disease causes, progression and treatment options. Ultimately, this knowledge will help researchers better target treatments in clinical trials.
Who can donate their brain?
Anyone over the age of 18 can choose to donate their brain after death. This applies to people suffering from brain disorders as well as those with healthy brains. In fact, both are needed for this important research. Donations from people without symptoms of brain disease provide important insights into what is considered normal brain aging and into certain brain mechanisms that may protect against disease. Simply put, healthy brains provide researchers with important comparative models to understand what has gone wrong in disease cases. So it’s not a topic exclusive to patients.
Researchers also need brains from a diverse group of people, representing different races and ethnicities, genders, geographic locations.
Potential donors, however, should be aware that brain banks may not be able to accept every brain donation. Given the resources required to carefully collect, assess, store, and distribute this valuable tissue, researchers must prioritize which brains are most valuable to the advancement of science. However, a rejection MSA brains is almost impossible.
How to become a brain donor
Although life and death decisions are never easy topics, now is the best time to consider brain donation. If you are considering brain donation, talk to your family and friends about the decision-making process early. This can reduce stress and misunderstandings at the time of donation. The opinions of family, friends can be helpful when you are deciding if brain donation is right for you.
It is a final gift to those you leave behind by being a part of the solution.
The process of brain donation can vary.
Check in with your neurologist or movement disorder specialist in hospital and familiarize yourself with the brain donation process. You will usually be given an informational brochure and asked to sign a consent form.
How the process looks in detail, the doctor will explain to you. As a rule, you do not have to do anything organizationally and the removal is invisible to surviving relatives. Usually there are no costs for you, but clarify all this now.
We should all think about brain donation, it can be very important for future generations. This is certainly not an easy topic, but we are already practiced in “taking it hard”.