This week, September 6-10, MS Australia is partnering with Jean Hales for Women’s Health’s annual health awareness campaign, Women’s Health Week, to spotlight MS and women’s wellbeing. Here WOB member Johanna, who is also NED of MS Research Australia, talks to Women on Boards about why getting the word out about MS is so important, and the search for the ‘holy grail’ of MS research.
“Multiple sclerosis (MS) affects around three times as many women as men and is commonly diagnosed between the ages of 20 and 40 years, when many women are focusing on career and family planning,”said Johanna.
”It is such an unpredictable disease especially the relapsing/ remitting type and the progression of the disease varies from person to person.” But an early diagnosis and good health management can make a huge difference to treatment and management of the disease.
She said as three-quarters of people diagnosed with MS in Australia are women, the partnership with Jean Hailes for Women’s Health - the Australian Government’s official national digital gateway specifically for women’s health information - was a “natural partnership”.
Johanna’s involvement with MS research began when she was part of the Brisbane branch of the MS Angels businesswomen’s network group for several years which funded various MS research projects.”Through the network, we had the opportunity to meet the researchers for the projects we funded and get insights into the focus and outcomes of the research.”
It was also at this time that Johanna developed a keen interest in the research being undertaken and the disease-modifying therapies.
Now Johanna is a Non-Executive Director with MS Research Australia, which recently merged operations with MS Australia.
She said at both MS Queensland and MS Australia she has had the privilege of working with other female Directors who have MS, “who are inspirational and do not let their MS define them”.
“It has also been fantastic to see the breakthroughs in research which have led, and continue to lead, to disease modifying therapies for MS. There are so many more therapies available now to slow the progression of MS especially for people with relapsing/remitting MS and to help people live well with MS.
“I am particularly proud that MS Queensland is funding an MS Clinical Trial on a treatment for progressive MS targeting the Epstein Barr virus, a virus which has long been implicated in the development of MS.”
She said one of the exciting areas of research is into ‘remyelination’ - looking at how myelin (the protective coating around the nerves in the brain and spinal cord that enables efficient signalling, but is damaged in MS) can be replaced.
“Over the last two decades, research has delivered effective therapies to shut down the immune attack on the brain and spinal cord in multiple sclerosis (MS), reducing MS relapses. The new ‘holy grail’ for MS research is to repair the damaged nerves in the brain and spinal cord and restore nerve function. This requires a greater understanding of how myelin is replaced, or “remyelination”, after it is lost in MS. New research funded by MS Australia has shown that deletion of a specific gene in the brain speeds up myelin repair in a laboratory model of MS.”
Researchers are also looking into the ongoing mystery as to why more women than men get MS. “In fact the number of women affected by MS has increased over the last 50 years or so,” said Johanna.
“MS Australia Head of Research, Dr Julia Morahan, tells me research has revealed a number of reasons why some people get MS and others don’t. Genetics is one factor, and behavioural and/or environmental factors such as whether or not someone is a smoker or has adequate vitamin D levels is another. A previous infection with Epstein Barr Virus, the virus that causes glandular fever, also changes the level of risk. The contributions of different factors is distinct for each individual with MS.”
“Our vision is a world free from MS. We continue to fund research projects to take us closer to achieving our vision.”