There was a book that I bought a long time ago called “I Bought a Ticket to Paris but Ended up in Rio”. The title alone has a lot of significance to my personal and professional life and I find myself thinking about that title often. My interpretation of the meaning behind the title is “I thought I was getting one thing, but was given another, which was out of my control”.
The first time I remember thinking this was in 1983 when my seemingly healthy son Ryan, was diagnosed with an incurable disorder, Muscular Dystrophy.
The shock and devastation of it all was almost too much for my wife and I. We didn’t expect this, Ryan certainly didn’t deserve it, we got handed something that we couldn’t undo, that was out of our control. That feeling of overwhelming helplessness enveloped us for many years – it still does.
I remember then thinking, I can fight back, I don’t like the word victim. So with some help, Muscular Dystrophy Association (MDA) was formed as a way of providing support and hope to families affected, raising funds to research MD for a timely cure and to lobby the Australian Government to step in and help. MDA has since raised more than $35 million for research and support services and we still live in hope. Hope, to one day, find a timely solution – to find a cure.
It has been a long hard road with MDA, trying to establish ourselves as a credible, reputable agency to help all those affected by MD. I feel that over time, we have achieved that and I am very proud. My initial motivation from Ryan’s diagnosis has never left me and I fight for awareness and a cure. Every family affected is on the same side.
Recently, the title of this book has come to the forefront of my mind once more, in a professional sense. My ‘ticket to Paris’ is MDA and the respect and reputation that has been built over the past 25 years. The ‘Ended up in Rio” is when I realise that no matter how hard you work for your credibility as an organisation, there are other people who may threaten to damage it without consideration or fore thought, all for the sake of a quick buck.
I feel that I can speak on behalf of our MD community when I say that all of us, combined, want the best support, the most advanced research, more awareness for the right reasons and to be respected by governing bodies.
Boris M Struk
We have till now, restricted our fundraising for research and support services within VICTORIA, knowing that not only Victorians will get every benefit from those donated dollars, but members of the Australian MD community will as well. We think carefully about where donations come from or where we acquire income from to protect our solid reputation that affords us high public, corporate and government acceptance and respect.
The media are currently abuzz with a fundraising evening to be held in MELBOURNE in June with proceeds being donated to the Sydney based Muscular Dystrophy Foundation (MDF). The organiser of this event is Melbourne underworld identity Mr Mick Gatto who was recruited by ageing American comedian Mr Jerry Lewis.
The Muscular Dystrophy Associations located in Western Australia and here in Victoria have no affiliation with the Sydney based Muscular Dystrophy Foundation.
Contrary to long-established fundriasing protocols, the MDF has commenced to fundraise nationally. Funds raised by MDF in Victoria and West Australia are dispersed to its member associations in other states. Victoria and Western Australia do not share in any of this funding.
With the respect and reputation that MDA has earned not only here in Victoria but throughout Australia and internationally, so too comes respect for similar agencies around Australia by association. Sadly some of these interstate operations have not shown us the same courtesy and all for the sake of, as has already been stated – a quick dollar.
The Muscular Dystrophy Association would like to state that we have no affiliation nor have we sought such, with this fundraiser held by Messers Gatto and Lewis and the Sydney based Muscular Dystrophy Foundation. We have not sought and will not be receiving funds from the event.
MDA has already embarked on a quiet campaign, behind the scenes, where it is working with major donors, corporate entities, all tiers of government, trusts and foundations in ALL jurisdictions throughout Australia to set the record and to differentiate from the ill conceived actions of the MDF and the Gatto / Lewis event.
Perhaps the thought for the day is that there are some things that happen that we can’t control. Sometimes we have uninvited “guests” and sometimes you can’t pick or influence unwanted “support”. I believe both my examples of “Paris V Rio” remind us that all we can do in these situations is try to handle them with grace, professionalism and dignity, not to give up but simply to work harder towards our goals.
I thank you all for your words of encouragement on this matter and continued support of the MDA and myself.
Until next time,