With two weeks to go until MND and ME make their New York Marathon debut, we caught up with Foundation CEO Paul Olds to talk about how the Foundation started and preparation for the Marathon.
He explained how it all began:
“It all started when my long time friend Scott Sullivan was diagnosed with MND and we decided to hold a Gala Dinner as a fund raiser for him and to help raise funds for research. We were amazed when we sold over 600 tickets and from there, we have never looked back. This was 4 years ago.”
It quickly became clear that people impacted by MND and their support networks were not getting the same service levels as other states and Scott made it his mission to increase the level of support available. This meant financial resources were needed.
“We were essentially an event driven organisation raising money but also raising awareness, developing support in the community. We were operating on a purely volunteer basis, all out of Scott’s lounge room and before we knew it we had raised over a million dollars.”
But it was the next step in the Foundation’s evolution that was the most challenging as MND and ME began to develop their own programs and support services.
“The disease is still a mystery in many ways. Some sufferers pass away in 6 months while for others it is 10 years. However the average is 27 months.
Support is a never ending feast as MND comes on differently for everyone. It may start in the legs which means initially a walking stick is needed. Then they progress to needing a motorised chair. So the challenge is stay one step ahead to provide the support needed to allow the person to remain independent, maintain some lifestyle and continue to interact.
For others, it may attack their throat and chest affecting the ability to speak. With help from the Wilson HTM Foundation we started a program where we lend an IPad loaded with a variety of speech applications. The person can then work with their speech pathologist to determine which is best for them. This has been ongoing for over 2 years now.
We are working with between 20 and 30 families at any given time and are expanding our geographical reach having just launched a regional and remote program for IPad lending, but as always, we want to do more”.
And what about for carers?
“One of our new programs is specifically for carers and is around Mindfulness training. This was run over 4 sessions and addressed techniques to cope with stress, with chaos, with getting sleep particularly in the final stages where the commitment becomes 24/7.
The survey results had participants reporting they were more effective carers, had more control, better relationships with the person they were caring for, felt they were living life and enjoying the time rather than having anger and frustration rule their life.
They felt a weight had been lifted and were giving themselves permission to enjoy life, be in the moment, and be the best husband, wife, father mother, son or daughter.”
Paul talked about the connection the Foundation has with running and how that came from Scott deciding to do the Gold Coast half marathon not long after he was diagnosed with MND.
“Around 25 runners participated in the first year. The Gold Coast running festival has become our event in a way with over 300 people participating in 2015, ranging from children in the 2 and 5 kilometres events through to all age groups in the 10 kilometre as well as the marathon and half marathon.
It is a true indication of the family nature of the foundation and we are very proud of this. “
As for the New York project:
“It almost evolved by accident. A few of us were chatting saying how good it would be to run the New York Marathon. It was meant to be 5 or 6 runners and we thought raising $20,000 or so would be great.
But it grew legs of its own and now we have over 40 runners and as of now, have exceeded $110,000 raised.”
Paul is also running in New York in what will be his first marathon and after a frustrating 4 months of injury has settled into a consistent training pattern and has been leading the group training runs of up to 36 kilometres.
“My injury issues from February through to July means I may not have the base I was hoping for but I am mentally fresh.
When we are out doing our long training runs there is a lot of chat and this often turns to what the emotions will be on the finish line. My objective is to see if I can run with others in the group and support them to the finish line and support others in our group as they finish.
I am in awe of our New York team. People who had never run 7 k before are now doing 35 k runs and the spirit is amazing. We often have 25 or 30 along to group training sessions and others want to join us.
We discussed the future of the Foundation and what was ahead including the possible impact of the National Disability Insurance Scheme (NDIS).
If the NDIS does what it says it will do and should do, people with MND will be in a much better position. It will deliver a good care package from Government.
Equipment should be there when needed, the speech pathologist and other allied health professionals also. Part of the work of MND and ME will be to make sure this happens and is happening correctly and then focus on filling in the gaps and ultimately delivering some serious funds to research.
If we can make this happen, we will know we are doing our job.
The support for the MND and ME and where it comes form is humbling.
There are so many charities out there and to see the faith people show in us amazes me every day. Our ongoing commitment is to maintain that trust.
Donors and supporters might have a parent who has heart disease, a friend who has had cancer and these are causes they support, but we have managed to touch them in a meaningful way and they want to support us as well.
It might be the children who used there pocket money to buy bottles of water and Chupa Chups and sell them in New Farm Park to raise funds. There was a seemingly homeless guy who ran beside Scott and Ian just out of Byron Bay on their Brisbane to Sydney bike ride, asking what they were doing. We then have us$50 saying his Father died from MND; it is the volunteers working to make an event happen or in the office, it all counts so much.”
And in conclusion:
“Our clients know what we are doing in New York and in a way, you couldn’t blame them if they were envious about what we are able to do and they are not. I mean, we are going to a wonderful place to take part in an incredible event.
But they are so supportive. They see a Facebook post of 25 people meeting for training at 4.30 am on a cold morning and know someone is thinking about them. They see fund raising break through the $100,000 point and know lots of people care about them and their families. And for all their pain and suffering and the pain and suffering of their families, they ask how it is going, they are encouraging. They are the real heroes in all this and we are their servants.”
Catching up with Paul was very grounding in that among all the hype and energy surrounding New York, here was a passionate, committed CEO firmly focussed on the big picture, the Foundation, its work, clients and future.
Author: Colin Morley