March 2004 - Victoria Carpenter

March got off to a roaring start with AUT 'awarding' us one of their third year film students to make a 10-minute documentary on behalf of the MDA. What a fantastic resource to help us educate people about Neuromuscular disorders. After meeting with our 'Film Director' it was decided a brief overview of the four most prolific conditions was the way to go. Sort of a Muscular Dystrophy 101, the best thing being that it could be used by both the educator and in a formal sponsorship presentation.

Filming started on the 26th of March at Mt Roskill Primary School where the Paralympics were being held. The crew and I were following the activities of one of our Duchenne Muscular Dystrophy boys, who has a fierce competitive spirit and won his race hands down. Over the next 6 weeks we will film another three clients, highlighting both their individual conditions and their determination to live independent and fulfilled lives.

I have had broad marketing exposure, but the world of Public Relations has been one that I have dallied in, until now. Adopting a brave face I contacted AUT and asked for training, so bravely in fact that I wangled 2 hours private tuition from the Head of the Department. In the end it was he who displayed bravery taking my jumble of ideas and helping me form them into something cogent, stopping just short of the communications plan - which he sent me off to write!

That had to take second place though to my trip to Australia to see our sister organization the MDA of NSW. They are a true success story and have turned themselves around over the last 2 years to become a slick well supported organization with Baz Lurhman as their patron and Laurie Daly doing advertisements and fundraisers for them. How had they done it? I planned to find out. The answer is hard work, networks and the far-reaching power of passion. I bled them dry, and I returned home enthusiastic and ready to let loose on the communications plan.

First though I took the opportunity to go with our Neuromuscular physiotherapist to one of the Kidzfirst clinics at Middlemore. It's a day where all the children with Neuromuscular conditions come and see all the health care professionals who are associated with their conditions, everything from Neurologists to Occupational Therapists. It was an amazing day with everyone working tirelessly, often without a break, to see and speak to not only the kids but also their families and all associated caregivers and teachers aids.

I am not afraid of hard work or long hours, but I have never worked so hard emotionally before. I was exhausted and wrung out afterwards, mostly from the sheer burden of realizing that I couldn't hug these kids and make everything better for them, in fact there was nothing that modern medicine could do for them full stop.

Finally I got the chance to put my money where my big mouth was when one my colleagues who has Muscular Dystrophy was presented with no option but to crawl onto a Tranzmetro Auckland train - that is if he wanted to get on at all. Such despicable prejudice from an employee, when the train is clearly available for use by the disabled! Well the MDA did its best to kick up as much of a media storm as it could, TV, Newspapers, Radio, Talkback we did it all, and we followed it up and will continue to do so for as long as the story has legs, which looks like it could be for some time yet.

Victoria

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