Volunteering to raise awareness: Di’s story

When Frank Glynn retired, he and his wife Di, started to make plans for life after work. A fit and healthy man who ate well, Frank was looking forward to the future. Highest on the bucket list was trip to Ireland, where his father grew up.
In 2020, things started to change. Frank noticed a change in his left hand and arm. He didn’t have the strength that used to be there. His grip wasn’t quite as strong. Wanting answers, Frank began researching his symptoms and suspected he might have motor neurone disease (MND). His diagnosis was confirmed shortly after.
Di remembers Frank researching MND relentlessly, wanting to understand what life had in store for him.
“Being diagnosed with MND is absolutely something that you cannot comprehend. That you have a life sentence, no cure and an average life span of 27 months,” explains Di. “You have to comprehend what life is going to be like. What you will no longer be able to do”.
Frank and Di hid his diagnosis from their family until people started to comment on his deteriorating hand.
“My husband was a very strong man. So unbelievably strong and stoic. But, when we told our children of what was going to happen, it was heartbreaking,” she said. “They have experienced the worst thing, watching a parent die. They were too young to have to go through that”.
With the help of carers, Frank’s family rallied around him to provide him with care and support throughout his illness. Di often reflects on Frank’s incredible strength and the way her children stepped up, even though they were young and should have been enjoying their time as young adults.
Frank died from MND at the age of 64, three years after his initial diagnosis. Di deeply feels his loss every day.

Building connection and volunteering to raise awareness
After Frank’s diagnosis, a mutual friend reconnected Di with Jan Daniher. They first met many years earlier when the Daniher family lived in Western Australia. With a shared experience of living with a loved one with MND, Jan offered invaluable support during Frank’s battle. This connection inspired Di to get involved with FightMND and volunteer for the Big Freeze.
Volunteering with FightMND has given Di the chance to share her story, raise awareness about MND and contribute towards a world without MND.
“Surprisingly, not many people know what MND is. I want to help ensure fewer families face the same heartbreaking situation we did,” she shared. “FightMND has done incredible work in raising awareness and making a real difference. I can’t imagine where we’d be without the passionate and dedicated people fighting to improve lives.”
As a volunteer, Di found a platform to not only advocate for the cause but also meet others who share her connection to MND.
“When you know someone affected by MND, you quickly realise how many others are facing similar struggles. Volunteering with FightMND has given me the opportunity to champion this cause. This is something everyone should do. By volunteering, you’re helping to make a real impact in the fight against MND.”
“A life is worth more than just the last 27 months,” Di said. “Our fight isn’t just for those directly affected by MND. It takes a community to defeat this beast. Volunteering is one powerful way to make a difference.”
Register to become a FightMND volunteer during Big Freeze 11
Our volunteers sit at the heart of the Big Freeze campaign. Their support ensures we can continue to invest in critical research and programs to support those living with MND, their families and their carers.
Will you dare to do and volunteer with us during Big Freeze 11? Learn more about the work of our volunteers and how you can get involved on our Volunteering page.