‘I lost my beautiful wife, Jenny Simko, 55, to the cruel and indiscriminate Motor Neuron Disease (MND). Jen was diagnosed in August 2014 and Rock Off MND was her idea.’ http://www.rockoffmnd.com.au/ I’m talking to Peter Simko. ‘The aim of Rock Off MND is to raise awareness and much needed funds that will go into research of this horrific disease. Our third event will be held next Saturday March 4th at Deakin Waterfront.
‘MND is a progressive terminal neurological disease in which the nerve cells or neurons that control the muscles that enable us to move, speak, swallow and breathe slowly degenerate and eventually stop functioning.
‘To run Rock Off MND we put together a committee, made up of myself, Jen, our three children and three close friends, each bringing our own complementary skill-set. Our first event in March 2015 raised $63,000. This was sufficient to generate the Jenny Simko MND Research Grant that was awarded to The University of Tasmania. Jen was with us for that first event (pictured here).
‘Our second Rock Off MND the following year made $168,000, thanks to generous sponsorships from local businesses including Rex Gorell (who donated a car to be raffled). This provided for two more research grants, with one study currently being conducted at The University of Sydney and another at the Austin Hospital, Melbourne through the University of Melbourne.
‘Russell Lowe approached me and told me he’d run a golf day, so Tee Off MND now occurs in October each year. He works tirelessly finding sponsors and organising the event. The two golf events held to date have contributed approximately $20,000 towards the research grants.
‘Without research we won’t find a cure. I’ve had the opportunity to talk to some amazing research Neurologists who have explained that MND is a very complex disease. Nevertheless they are determined to try find the cause and, ultimately, a cure.
‘Jen and I both went to Roslyn Primary School, then on to Belmont High. It was in Form 5, at 16 years old, that we started going out. Seven years later we married and were very happily married for nearly 32 years. We have three wonderful children.
‘We had a fun and interesting life together working and living overseas and interstate. We decided to return to Geelong to be close to our families and because it is a great place to raise children.
‘Jen was part of the Dignity Therapy program run by Barwon Health (read our story about this posted Oct 1st 2016) and we were very appreciative of that, it’s an incredible service run by some amazing people.
‘People couldn’t believe Jen’s positivity, she never let the disease get her down. She was always thinking of others and worried about the affect this had on them. I’ve now met a number of people from Geelong who have MND and I can’t believe their fighting spirit, resilience and positivity in the face of the challenges MND brings. Like Jen, they are savouring every day. Just last week I had coffee with a sufferer, and spending time with someone that has the disease further drives my commitment to Rock Off MND. My hope is that one day soon the news headline will be that they have discovered the cause of MND. I really want it to happen soon, but if not for this generation, at least for our children and grandchildren.’
www.facebook.com/rockoffmnd/ ‘There will be four artists playing at Rock Off MND 2017 in the attractive outdoor courtyard at Deakin Waterfront next Saturday 4th March. This year we are thrilled to feature Jon Stevens, Tim Campbell, the Pierce Brothers and Maddy Jane. We hope you can come along.
Jen said to me in her final months ‘Each day stop and ask yourself “What am I grateful for today?” I don’t even have to consciously try to think about that anymore. It comes very naturally now, and it’s one of many lasting gifts Jen has left.’
HuG 