Jo Boon of Gumdale, who has Motor Neurone Disease, presents a donation to help others with MND. Photo: Supplied.
BY CAITLIN MULCAHY, MOTOR NEURONE DISEASE ASSOCIATION OF QUEENSLAND INC.
Despite her terminal illness, Gumdale woman Jo Boon is determined to not let her diagnosis of Motor Neurone Disease (MND) define her. To help others going through their MND journey, Jo and her family recently held a gala fundraiser and raised more than they thought was possible!
The Boons presented a cheque to MND Queensland with the final fundraising amount revealed to be an incredible $51,000 that will help change many lives.
Passionate is just one word that describes Jo and her family in their efforts to increase awareness of the disease that will sadly steal her ability to speak, move, swallow and eventually breathe.
Since being diagnosed in October 2019, Jo has fiercely campaigned to share her story of ‘rebellious hope*’ and has done much to raise awareness of the impacts of MND before it robs her ability to speak, stating it is a cruel disease that ‘silences the storytellers’.
In an effort to give back and gather an audience for her to share her story, Jo took on the task of throwing a gala to raise funds for MND Queensland, who provide specialised supports to families impacted by this terminal illness. MND affects over 2,000 Australians and on average two more people are diagnosed daily and sadly two people die every day from MND. The average life expectancy is just 2.5 years from diagnosis, which explains Jo’s urgency to share her voice now.
In her speech, Jo said she knows it “may be too late for her”, with no known cure yet found for MND, but she is now selflessly advocating for others so that they do not have the suffer with the same impacts.
We asked Jo what motivated her to put on the event and she said “from day one I wanted to do something to give back”. She was particularly motivated to get involved when she learned that people diagnosed with MND after the age of 65 don’t qualify for the NDIS.
“I saw red and then I felt guilty. I want to give back to all of my friends…I don’t think it’s fair that you work all your life and you get a disease that’s got no cure and then no help,” said Jo.
The family initially set out to raise $10,000 for the charity, and were overwhelmed with generosity as it grew to $51,000. MND Queensland’s CEO, Ian Landreth said that the funds will go a long way to providing specialised support services for clients regardless of age and it could not be possible without the Boon family’s perseverance to create awareness.
“We are very grateful to Jo and the Boon family. The gala was amazing and it was so much more than a fundraising event… it was a ‘Life Event’. People learned about MND, they laughed and cried and had a magical evening thanks to Peter and Jo and their amazing family and friends,” Mr Landreth said.
To make a difference in the lives of people impacted by MND, please donate at www.mndaq.org.au/Donate/Donate
*quoted by: (Nightbirde [@_nightbirde] 9 September 2021).
BY CAITLIN MULCAHY, MOTOR NEURONE DISEASE ASSOCIATION OF QUEENSLAND INC.
