Bernice Williams, a resident of Nova Scotia, Canada wants to make more people aware of the option of donating the brain for medical research purposes and to make it easier to choose this option, in honour of her dad who passed away from Alzheimer's disease. Bernice has created an awareness campaign called 'No Brainer' to encourage her provincial government to create an option on the form, when people sign for their organ donor cards, to enable individuals to choose to donate their brain for medical research purposes.
"Currently, it seems the focus is on donation of organs for transplant but donating organs for research is just as important. I aim to make it easier for individuals to donate their brains for research and for families to donate their loved one's brains for research. If the check box was on the form when you sign up for your organ donor card, more people would be aware of this option. I believe the answer to many of our problems is research," says Bernice.
Why Bernice started the ‘No Brainer’ campaign Bernice’s dad, Jackie Williams, was diagnosed with dementia in 2006 at the age of 65 and he passed away at the age of 69 years old in 2009. His brain was donated to the Maritime Brain Tissue Bank, one of three brain banks of its kind in Canada.
“A tour of the brain bank at Dalhousie University in 2010, was extremely eye opening for me. I saw a healthy brain next to a brain with Alzheimer’s disease and without any medical knowledge, I could easily identify which brain had Alzheimer's and which one didn't. This changed my view of the disease and helped me understand why my dad no longer knew who I was,” she says.
Bernice says she soon realized that few people seemed to know that tissue banks exist. She says the Maritime Brain Tissue Bank, where her dad’s brain was donated, has collected 1300 brain tissues, which are shared with researchers across the globe. On average, that's only about three brains a month and if they had 30, 300 or 3000 brains per month, research could go much further. Bernice urges individuals to have the conversation with their friends and loved ones about being an organ donor for research.
New organ donation law for Nova Scotia In April 2019, Nova Scotia's Human Organ and Tissue Donation Act was instated in the province, which means all adults in Nova Scotia would be considered potential organ donors unless they opt out. The legislation would not take effect for at least a year, to allow time for planning and public education and awareness. However, the organs to be donated will be for transplant purposes and not research purposes.
Both healthy brains and brains with disease are needed for research to identify changes related to disease and to those associated with normal ageing. According to the University Health Network, donating a brain for research, helps researchers find out more about the causes of neurodegenerative diseases, and helps them come closer to finding a cure for diseases like Alzheimer's, Parkinson’s, Progressive Supranuclear Palsy and Multiple System Atrophy.
It also assists with finding new treatments, helping families understand the diagnosis and gives donors a chance to help improve future care and treatment of patients with the disease. The University Health Network notes that donating a brain does not affect funeral arrangements and a specially trained neuropathologist does the procedure very carefully as soon as possible after death. The family can still arrange for an open casket.
To be a donor for research prepare in advance According to the Alzheimer’s Association, currently arrangements for donation of a brain for research need to be made with a research center, tissue or brain bank, or university prior to a person's death. Once death occurs, time is critical, so having the proper consent and release forms in place can help ensure the donation takes place.
If a family wants to donate a loved one's brain to research in Nova Scotia, they must request an autopsy through a family doctor or specialist at their local hospital. The family must sign an autopsy consent form and the intent to donate to research must be noted on the autopsy consent form.
The doctor who signs the Medical Certificate of Death must be made aware that an autopsy is to be performed so the body can be transported. The doctor must call the funeral home for transport of remains to hospital so that brain donation can proceed.
Maritime Brain Tissue Bank states the average time to get the autopsy report is 8 to 10 months. The brain autopsy requires the tissue be fixed in a preservative for about one month. Following this procedure, sections are taken from the brain. These sections are stained for a variety of changes that may have occurred in the brain. This process takes a further two months. When the stains are complete, the neuropathologist prepares a final report that is sent to the referring physician, the family physician, and the brain tissue bank.
Find out more about the #NoBrainer campaign here: