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November 2004 - Victoria Carpenter
November was a huge month for the Muscular Dystrophy Association. In 2002 we held our inaugural Neuromuscular Conference. It was such a success we decided to make it bi-annual event. It’s a massive job bringing together the international experts in neuromuscular conditions and all the people who need to hear them, which includes anyone with an interest in Genetics, Genetic Research, the latest Fertility options (for people who have a recessive or genetically linked condition), general disability issues and Neuromuscular Conditions.
I can’t stress enough what a unique opportunity it was to hear experts in the Neuromuscular and Genetics field. Topics included Genetics, Friedreichs Ataxia, Myotonic Dystrophy, Duchenne Muscular Dystrophy (DMD), Research into Neuromuscular Conditions, Neuro-psychology, Foot surgery, Heart Issues, Respiratory Issues, Pediatrics, Fertility/Family Planning, Parenting, Equipment, Assistive Technology, Funding and Exercise.
Our keynote speakers were Pat Furlong (Parent Project USA) and Associate Professor Steve Wilton (Australian Neuromuscular Research Institute, Perth). Associate Professor Steve Wilton completed his PhD in 1983 in the Biochemistry Department at the University of Adelaide, which was one the first facilities in Australia undertaking recombinant DNA technology (gene cloning). He joined the Australian Neuromuscular Research Institute (ANRI) in 1991 where he was responsible for developing and applying molecular diagnostic tests to a range of neuromuscular disorders, sometimes within only weeks of the causative genes being identified. He is now the Head of the Experimental Molecular Medicine Group at the ANRI. The group is pursuing a variety of molecular approaches to correct or compensate for mutations in the dystrophin gene that would normally result in DMD.
Pat Furlong is the founder of Parent Project in the USA. Can you imagine losing two children to the same disease within 6 months of each other? Many people would crumble under the strain, but Pat Furlong turned her suffering into a mission – to find a cure for Duchenne Muscular Dystrophy – the disease that took her son’s lives. Tired of the lack of funding available for DMD research and disgusted that medicine had made no progress with the disease since the late 1800’s, Pat founded Parent Project Muscular Dystrophy. This foundation works to raise money for research and provide information and support to parents of boys with DMD. The money raised opened up research labs at UCLA and University of Pittsburgh that work exclusively on this disease. She has lobbied congress for more federal money for DMD research and even driven cross-country in a tank to raise awareness.
I could go on about the knowledge I gained regarding respiratory issues, fertility, genetics, research progress around the world and about the hope that a lot of these procedures (surgical intervention in the case of boys with Duchenne), but the most important learning was that the famed tyranny of distance affects us all. Words can’t describe the feeling of unity and hope that comes from meeting those that are making a difference around the world.
My role over this period was to achieve media coverage for the speakers at the Conference: on National Radio, TVNZ, The Dominion Post, The Waikato Times, and hopefully the New Zealand Woman’s Weekly. Seems quite lowly in comparison! I really felt this week that I was in the presence of genius and I was humbled that that genius was directed towards finding some cures, and some interim help for these conditions that matter so much to me and my organisation.
My pictures this month are from Dunedin Hospital’s Orthopedic surgeon, John Dunbar’s presentation on Tendon surgery for boys with Duchenne.
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