No brainer donation
Bridgewater resident wants more brains donated for research
KRISTIN GARDINER SPECIAL TO THE SOUTH SHORE BREAKER
BRIDGEWATER, N.S. — Bridgewater resident Bernice Williams knows what it's like to lose a loved one to Alzheimer's Disease.
That's why she created the No Brainer project to raise awareness about donating brains for research.
Williams' father was 65 when he was diagnosed with early onset Alzheimer's. Four years later, in October 2009, he passed.
“It's a legacy piece. It's in honour of my dad,” she said.
On Nov. 1, Williams put up a video to educate people on why brain donation is important.
“Research is the only answer in finding a cure,” she said. Not only for Alzheimer's, but for all brain-related diseases, even tumours and concussions.
“They need to be able to compare apples to oranges,” she said, emphasizing the importance of donating healthy brains, as well.
Nova Scotia has the highest rate of organ and tissue donation in Canada. This year, every eligible resident in the province will automatically become part of the donation program unless they choose to opt out.
Organ donation, however, focuses on saving lives. It only involves the kidneys, pancreas, heart, liver, lungs and small bowel. Williams is trying to change that and add brain donation for research to the donor card.
“I can't bring my dad back, I can't change what happened to him, but I can certainly make a difference going forward,” she said.
Currently, in order to donate a brain to the Maritime Brain Tissue Bank, the deceased must first undergo an autopsy. Then, since the autopsy form does not include brain donation, the donation must be noted on a separate hand-written statement.
The Maritime Brain Tissue Bank focuses on researching dementia in its various forms, including Parkinson's Disease and Huntington's Disease, searching for causes and cures. They also accept healthy brains. According to the brain bank's website, brains are available for research for about 10 years.
Williams donated her father's brain to the Maritime Brain Bank for use in research. Although he was a registered organ donor, none of his organs could be donated due to his illness.
RAISING AWARENESS
Shortly after her father's death, Williams worked with Ian Whatley and Ben Love on their Across the Nation project, cycling and fundraising for Alzheimer's. In particular, she managed their hotels and reached out to the media.
When Whatley and Love finished their journey in Halifax, Williams went with them to the Maritime Brain Bank. There, Williams saw two brains side by side on a table – one with Alzheimer's, the other without. Williams, who has no medical background, was able to tell by sight which brain had Alzheimer's.
“It was such a powerful realization,” she said.
While Williams is the sole person behind the awareness campaign, she has also reached out to Dalhousie University to make them aware of her work.
In her campaign, Williams said she has received great feedback.
“Anybody who hears it is stunned that that's not what happens currently,” she said.
Williams plans on creating a second video in order to put a face to the project. She wants people to hear about the challenges that come with dementia, and what it's like to have a family member with the disease.
She created the campaign to raise awareness and start a conversation, but she's hopeful she can make a change. She tracks people who sign up on her website to receive more information, and eventually wants to take those statistics to the government.
“It doesn't just have to be people who have an illness,” she said. “It's really about people who want to make a difference for generations to come.”
Saltwire Network
Scott Doherty scott.doherty@sackvilletribunepost.com
All rights reserved. No part of this publication may be reproduced, stored in retrieval systems or transmitted in any form or by any means without the prior written permission from the publisher.
To start or stop delivery or order a delivery tube, call 902426-3031 or 1-800-565-3339 (toll free) o
To write a letter to the editor, email editor@southshorebreaker.ca, fax 420-6430, or write South Shore Breaker, P.O. or write South Shore Breaker, P.O. Box 610, Halifax, N.S. B3J 2T2.