Last weekend the research team and I had the opportunity to head over to the Accelerator Centre in Waterloo and participate in Hack4Health, a 36-hour marathon where students at University of Waterloo were plunged into an epic brainstorming laboratory to find wellness solutions for people living with MS, Alzheimer’s or related dementias. More than 70 student “hackers” partook in the event , along with mentors consisting of people living with MS or dementia, occupational therapists, fitness experts, and technology entrepreneurs tasked with guiding the students in the design of their concepts.
The hackers at the event primarily came from backgrounds in engineering, programming and social sciences, and I was excited by the prospect of witnessing a group of fresh minds delve into the topic of wellness and MS with a unique perspective. An additional bonus of having so much creative talent from outside the MS field was getting young minds thinking about MS and thinking about new solutions for tomorrow.
The hackers of Hack4Health. Photo Credits: Kwame Ansong
The destructive inflammation that strips nerve fibres in the central nervous system (CNS) of their myelin coating is the main culprit responsible for the signs and symptoms of relapsing-remitting MS, and all of the approved drug therapies for MS target some aspect of autoimmunity and/or inflammation. On the other hand, the neurological decline and long-term disability that affects so many people living with MS is mainly triggered by a process called neurodegeneration in which the neurons and their fibres become injured, break down and even die. The cause for this neurodegenerative process is still uncertain, but a growing body of evidence is pointing to mitochondria as both victims and perpetrators of neurodegeneration.
Last week marked an important milestone in continuing efforts around the world to end progressive MS. By now I’m sure most of you have heard the exciting news from the International Progressive MS Alliance, which awarded 11 grants to collaborating researchers in 6 countries. These grants, dubbed the Planning Awards, are the first step in the Collaborative Network Awards that were envisioned to build bridges between researchers across countries and scientific disciplines, pool their minds and resources, and make significant inroads into our understanding of progressive MS in the search for a cure.
Attendees of the second PMSA Scientific Meeting, including researchers, representatives of member MS Societies and the MS International Federation, and people living with MS
In the last Research Decoder, I went over some of the most common clinical outcome measures used to evaluate the efficacy and safety of new or repurposed interventions for MS in clinical trials. Clinical outcome measures are invaluable in that they provide a quantitative measure of how disease course and disability – characteristics that directly affect a participant’s health and quality of life – are influenced by an intervention, but they don’t necessarily tell the complete story. In part II, I’ll be taking a deeper dive into some of the other outcome measures that help to fill in the missing pieces of the puzzle.
During my years as vice-president of research at the MS Society, I’ve witnessed a change in how people with MS view research and their interest in being part of research. More and more I hear from the community that research is a process that they want to learn more about, and play a role in in terms of how research is conducted, reviewed, and informs health practices and policies.
This led to an important initiative that was lunched three years ago – the engagement of community representatives. I remember sitting in a meeting room with my colleagues, trying to figure out how we were going to involve people with MS, their families and caregivers in the research review process. We decided that we were going to invite them to sit on the review panel, to take part in meaningful conversations about how research dollars should be spent and what type of research would have the greatest impact on their quality of life.
The positive effects of this process became evident very quickly. The scientists and clinicians around the room were given a chance to hear how the research studies they were deliberating would affect the lives of people who live through MS each day. As well, the community representatives offered valuable feedback on how researchers should communicate the goals and impacts of their studies to a lay audience.
Community representatives enrich the research review process by offering a unique perspective that is of paramount importance when trying to determine which research proposals will receive funding from the MS Society. It allows the research community to take a step back and reflect on how the research will not only advance the field, but whether it will bring about meaningful change in the life of a person living with MS.
I encourage anyone who is affected by MS and wants to play a role in the decision-making process for research funding to apply to be a community representative. For more information on eligibility, roles and responsibilities, and how to apply, visit the MS Society website!