I have been Secretary of the MSA Coalition and Chair of the Research Committee since joining the board in 2013. I have also been a member of the MSA community for 25 years. After my mother-in-law was diagnosed in 1993, I found a wealth of information and a supportive and caring community in the MSA Coalition. Many people tell us that having the MSA Coalition as a resource gives them hope and that they feel like part of our family. A care partner told me recently that our work is “a pillar of strength and a source of valuable information.” It’s so good to know that even as we have evolved and grown over the years our core values remain unchanged.
Since expanding our mission in 2012 The MSA Coalition has become well known for our “four pillars” of Support, Education, Research and Advocacy. This month I’d like to talk about the ways our organization strengthens the efforts of those working to find treatments and hopefully one day a cure for MSA. Researchers, healthcare professionals and pharmaceutical companies all rely on our support and assistance as they carry out this important and urgent work.
The key way we support these efforts is through our research grant program. Recently surpassing the $2Million milestone for funding global MSA “seed” grants, these 1-year projects are meant to test out new ideas and allow scientists to gather data before taking their ideas to the next level and hopefully attracting the attention of new funders with deeper pockets. Guided by the Global MSA Research Roadmap set by world leading MSA researchers in 2014, our research strategy takes a global view and aims to fund the most promising research in four key areas:
- Discovering the underlying cause (pathogenesis)
- Developing better diagnostic tests (biomarkers)
- Enabling early-stage laboratory experiments of candidate drugs (pre-clinical)
- Facilitating patient-centered studies (clinical)
To date, we have awarded 42 of these small grants and are expecting lots of new applications to start rolling in over the next several weeks as we ramp up our 2021 research grant cycle. Our research committee and our Scientific Advisory Board will have a busy few months ahead as we sort through this year’s applications and assign them to an independent panel of scientific reviewers for scoring. From there we will pare down the list and award funds to the most deserving projects.
In our 7 years of funding research grants, we have reviewed over 150 applications. Interestingly we sometimes see very similar ideas proposed which has allowed us to connect scientists to each other and foster new collaborations. Seeing these commonalities got us thinking about whether there were some other ways we could make a difference with our relatively modest research budget and so we conceived the notion of starting a “Core” grants program as a counterpoint to our existing Seed grants. Core grants are given to more robust projects involving several labs that all collaborate on a major theme or unanswered question. See our previous press release to learn more.
Supporting the next generation of MSA researchers is also important to us. Offering travel grants to early career investigators allows them to attend major scientific conferences and present their MSA related work. This is truly a win-win for all involved, they get experience and recognition in the scientific community and we get another young dedicated researcher who is encouraged to keep working on MSA rather than another disease. We hope to be able to offer these grants again in 2021 as travel begins to open up and conferences are once again held in person.
Another way we support research is through our sponsorship of conferences or other events where MSA is a major subject on the agenda. Over the course of a year there are several important scientific conferences where MSA is discussed, new collaborations are forged, and medical and scientific professionals learn about MSA while earning educational credits. Our sponsorships help ensure these conferences continue to be staged and that MSA remains on the agenda year after year.
A key conference that takes place every two years is the International Multiple System Atrophy Congress. The idea for this congress was conceived over 20 years ago by a group of dedicated MSA researchers who wanted to work more closely together and share ideas to try to make a difference. It had been very difficult however to maintain the momentum needed to consistently get this event organized. In 2015, a conversation that began with “Whatever happened to the International MSA Congress?” took place between a MSA Coalition board member and a MSA researcher. This paved the way for the resurrection of this very important series of meetings with the MSA Coalition emerging as premier sponsor. Since 2016, buoyed by our support, the International MSA Congress has grown bigger and stronger. We look forward to supporting it for the 4th time in 2023.
By attending scientific conferences and listening to the talks, The MSA Coalition get a sense of the latest news and trends in the research community. At the recent International MSA Congress held virtually we learned of some new treatments on the horizon. Lately a major theme has been to promote more studies aiming to improve quality of life by offering various interventions like physiotherapy, speech and occupational therapy. This has inspired a new section to be added to our very popular MSA Treatment Pipeline page for “Non-Pharmaceutical Studies”. You can check it out here.
Lastly, The MSA Coalition works closely with many partners in the Biopharmaceutical industry who seek our advice as well as our assistance to make connections with patients and their care partners. This ensures that their voices are heard as the pharma industry work to discover new treatments.
It’s an exciting time for MSA research! Right now there is real hope brewing that the drug candidate Verdiperstat may actually prove to be of help in arresting the progress of MSA. Though it is difficult to be patient we must wait a little while longer for a few people to finish up their 48-week trial of the drug. Only when all subjects have completed their trial can the data analysis begin. Fingers crossed that we will hear some positive news by end of 2021.
I am so grateful to all of you who follow and support MSA research. Many of you regularly share research articles and discuss your needs. I want you to know that your voices are growing stronger and researchers and pharmaceutical companies are taking notice. Together we are building hope.
Pam Bower, Secretary
Chair, Research Committee
MSA Coalition Board of Directors