Ever since I encountered one of the biggest oxymorons of my entire youth, I’ve never been keen to do a ‘fun run’ in my adult years. Don’t get me wrong, I enjoy exercise but running is something I’ve only ever had a fleeting fling with, on a treadmill with 50 Cent playing on my first edition iPod. So you get the gist of when that was. However, when one of my 30-year-friendship childhood besties asked me to join her in a fundraising run for Motor Neurone Disease I put my adolescent angst aside and registered immediately. Her Mum was diagnosed last year.
MND NSW explains motor neurone disease as “the name given to a group of diseases in which the nerve cells – neurones – controlling the muscles that enable us to move, speak, breathe and swallow; undergo degeneration and die. MND does not affect the sensory neurones – the nerves that receive messages from things we see, touch, smell, hear and taste. It is estimated that there are presently more than 2,000 people with MND in Australia.” There is currently no cure and causes are not yet known, but ongoing research throughout the world is looking for causes.
My friend’s Mum, a healthy woman in her 50s, an aerobics teacher for retirees in her local area is suffering through the immense pain and frustration of MND. The first time I saw her after being told of her condition I cried all the way home, for this is a disease that moves swiftly and in the cruellest of ways.
I asked my friend, “‘why a fun run?”, and she said, “I have to feel like I’m doing something”. Her words hit me right in the heart, and the guts. In what is no doubt one of the hardest times in her life, she finds courage and hope in taking action to help raise awareness about MND, and funds for an organisation committed to funding research and supporting people with MND and their families.
Trudging through the soft sand 10km loop was nothing compared to what someone with Motor Neurone Disease has to live with every moment in their day. But there is also an enormous amount of strength and courage, love and hope that shines through in my friend’s Mum and her family. I listen to the wisdom her Mum shares about family, friendship, and the things that really matter, and delight in the times we have together, to be fully present and respectfully curious about how to be the best supportive friend I can be.
But this is not a call for pity. Rather, it’s an invitation to understand and acknowledge what MND is all about so we, as a community, can better support people with the disease, their families and carers. I asked how to best support research for MND and she suggested donating to FightMND, the largest independent funder of MND research in Australia, currently helping fund several clinical trials and drug development research programs.
I’m so grateful to Jocelyn and the BENCH PR team for supporting us in the Run for MND, a reminder of just how incredible it is to work with these women who are not just colleagues but wonderfully human beings.