- The International Progressive MS Alliance works to develop effective treatments for progressive MS
- Their team of people living with progressive MS ensures the lived experience is embedded at every stage of work
- MS Australia acknowledges the contribution of Australians Dr Vanessa Fanning, outgoing Chair of this Engagement team, and three new representatives.
Towards effective treatments for progressive MS
The International Progressive MS Alliance (the Alliance) is a global collaboration formed in 2012 to accelerate the development of effective treatments for people with progressive MS to improve quality of life.
It brings together MS organisations, researchers, health professionals, the pharmaceutical industry, companies, trusts, foundations, donors and people affected by progressive MS. As a managing member, MS Australia contributes research funding to the Alliance in the global effort to find effective treatments for progressive MS.
The Alliance’s work is broad – searching for new drugs, developing huge global databanks to understand progressive MS, and finding the best wellbeing supports for people living with progressive MS. See here for more information about the work of the Alliance.
Lived experience is essential to progressive MS research strategy
The experience and expertise of people affected by MS are essential to the work of the Alliance.
The People Affected by MS Engagement Coordination Team identify what matters most to those living with progressive MS and those who care for them, with respect to research, advocacy and communication.
At every stage of the research process undertaken by the Alliance, from application design to review of the potential projects, their voices add value and inform the priorities of the Alliance, both scientific and beyond.
They ensure that Alliance efforts are focused on solutions that will result in life-changing treatments.
Thanks to Australian members, outgoing and new, for their insights and dedication
MS Australia acknowledges the immediate past Chair of the Engagement Coordination team, Australian Dr Vanessa Fanning for her considered and tireless work. This has helped deliver major wins including new drug candidates and the new MRI data resource for progressive MS.
Vanessa Fanning, MS Australia Lived Experience Expert Panel (LEEP) member.
In a recent interview, Vanessa explains, “One of the worst things about living with progressive MS is that you don’t know how it’s going to progress…”
“So the Alliance is really special because it’s focusing particularly on progression and that’s an area that previously was neglected… there’s much more to living with MS than a cure.”
“It is about finding ways to understand what causes MS, what causes progression and ultimately, what we people living with progressive MS are hoping for, is solutions that will perhaps restore function, reverse MS and give us back our lives.”
The new Engagement Coordination Team includes three Australians living with progressive MS – Mark Elisha, Simone Flanagan and Carla di Cocco – joining team members from the US, UK, Italy and Canada.
Importance of lived experience in MS research
Lived experience helps ensure MS research reflects the real priorities, challenges and outcomes that matter most to people living with MS and their families. By partnering with people who have direct experience of a condition, research is more relevant, inclusive and more likely to improve everyday quality of life.
The lived experience of MS is embedded in the work of MS Australia and many Australian researchers through MS Australia’s Lived Experience Expert Panel. You can learn more about our LEEP members here.
