Michael Katz and Richard Balanson have many things in common.
They both live in New South Wales, have spent much of their lives working in the corporate business and banking world, and both have personal experiences with Parkinson’s Disease.
They also have a shared goal — to raise awareness and help find a cure for the neurological disorder that has impacted both their lives.
Mr Katz and Dr Balanson have helped bring the University of Tasmania’s new Parkinson’s Massive Online Open Course (MOOC) to life through a $250,000 donation.
The University will launch the free online course today — which will be available globally — with the hope of educating the public and health sectors about the rapidly growing disorder and building a more connected Parkinson’s community.
Dr Balanson, who lived in San Diego before moving to Sydney, was diagnosed with Parkinson’s 15 years ago.
“The knowledge base of the general population having the disease (back then) was quite small,” Dr Balanson said.
“I only had a couple of featured symptoms like twitchy fingers and lack of smell … as a consequence my GP said ‘why don’t you go to a neurologist and have them check you out?'”
Dr Balanson said he had a mix of emotions after being diagnosed.
“Oh my God, am I going to die? Am I going to be injured? Am I going to be humbled with this disease?” he said.
“The one thing that happens with diseases is you begin to accumulate friends who have the same disease.”
It was through a Parkinson’s support group that Dr Balanson met Mr Katz, whose wife Frederique has been living with the disorder for about six years.
“It’s such a complex disease,” Mr Katz said.
“It has over 40 separate symptoms, everybody has an unusual mix of symptoms and almost nobody has the same set of symptoms.
“It’s really hard to understand when one is first diagnosed.
“There’s a big shock factor but there’s nowhere to go to get a simple explanation and most importantly a thorough university-level education, and that’s what a MOOC does.”
‘We could see there was a gap’
Mr Katz and Dr Balanson decided to start their own registered charity Parkinson’s Research Foundation as a way to promote research into the prevention, cure and control of Parkinson’s.
They have also set up a philanthropy fund called Miriax to help fund research projects so researchers don’t have to go through annual grant cycles to secure funding.
“The ultimate is to give people understanding, which through understanding you can actually deal with the horrendous nature of the disease,” Mr Katz said.
“The longer-term goal here is to build a community of stakeholders in Parkinson’s, both patients, participants, carers, allied health professionals, professionals, and to use that to develop new treatments and get involved in new trials as they become available.”
The Parkinson’s MOOC — which has been developed by the University’s Wicking Dementia Research and Education Centre and Menzies Institute for Medical Research — will officially be launched by Federal Health Minister Mark Butler via video to Hobart this morning.
Wicking’s Professor of Neurology Jane Alty said the university had been wanting to develop the Parkinson’s MOOC for some time but had been waiting to secure funding.
“Parkinson’s disease is actually the second-most-common neurodegenerative disorder after dementia, and importantly it’s the fastest-growing neurological disorder around the world,” she said.
“We could see that there was a gap (in the resource knowledge space).”
The Parkinson’s MOOC contains five modules that participants can complete at their own pace.
“They can watch videos of other people with Parkinson’s talking about their experience, they can watch videos of experts around the world talking about the latest research and treatments,” Professor Alty said.
“The MOOC is really filled with hope and positive messages, realistic messages and I think that could be really therapeutic to people that have just been diagnosed.
“There’s a real need for us to improve our understanding and awareness of Parkinson’s so for those who are living with Parkinson’s we can care for them better, we can reduce stigma.
“I’d love that when doctors are diagnosing patients they signpost their patients to this resource and say as well as this amazing research that’s out there, this is something that you can work through with your family.”