Burgers to Beat MS day raises funds to help improve the lives of Canadians living with multiple sclerosis. This fundraising campaign led the MS Society of Canada in partnership with A&W Food Services of Canada Inc has already raised over $9 million over the past 8 years, and this year A&W increased their donation to $2 from every Teen Burger® sold across the country on this day. Burgers to Beat MS creates an opportunity for people across the country to come together to support Canadian-led efforts to better understand MS and find a cure, while enjoying a delicious Teen Burger®.
The cause of MS is still a mystery and researchers continue to examine ways to prevent, diagnose and treat this highly unpredictable and often debilitating disease. Support from A&W allows the MS Society to invest in innovative research, support international research collaborations, and translate discoveries from ideas to new clinical tools and treatments.
Here are some projects that would not be possible without the amazing fundraising efforts of A&W and other dedicated partners and volunteers of the MS Society:
Team Roze at Hack4Health 2.0. Pictured (left to right): Lisa Loiselle (Co-chair), Lori-Ann Williams, Marium Kirmani, Rui Su, Karla Boluk (Co-chair)
I recently had the opportunity to interview Roze, a team of University of Waterloo students and the winners of last Fall’s annual Hack4Health competition hosted by the university. Hack4Health is a 36-hour innovation marathon bringing together students from multi-disciplinary fields working together to design a technology-based project on new wellness solutions for people living with multiple sclerosis and Alzheimer’s disease. Check out a previous blog post about the Hack4Health program and winners of the 2015 competition.
The members of team Roze – which include Lori-Ann Williams, Marium Kirmani, Rui Su and Tina Chan –bring experience from different areas: public health, pharmacy, software development and informatics. These talented ladies were excited about the opportunity to learn about MS and other neurodegenerative diseases as well as how they could contribute their skills of intersecting technology and health to make improvements in the quality of life for people living with MS. At Hack4Health, they pitched the idea of an app that promotes appropriate physical activity for women living with MS to help cope with and potentially reduce fatigue, one of the most common symptoms of MS. As the winners of the competition, they were selected to work with a supervisor to further develop their project with the help of a $15,000 grant from the MS Society of Canada.
In my interview with team Roze, I learned more about what motivated them to participate in Hack4Health, their fatigue-based technology, and a bit about the members of the team themselves.
Coordinated by the MS International Federation since 2009, each year the last Wednesday in May marks World Multiple Sclerosis Day. May is also MS awareness month, where the MS community unites to raise awareness of the challenges of today and rallies to find solutions for tomorrow. In fact the MS Society of Canada spent a few days in Ottawa, Ontario this month to meet with parliamentarians and make the voices of people with MS heard. Check out the news article highlighting our advocacy efforts around securing income and employment, improving access and accelerating research.
With the goal of helping better the lives of 2.3 million people living with MS world-wide, events around the world have highlighted what it means to live a #LifewithMS– the theme of this year’s World MS Day. The hashtag is being used around the world to share personal experiences and advice on how to improve life with MS.
Additionally, there is a great deal of research taking place around the world that has enormous potential to enhance #LifewithMS, whether it’s through the generation of new treatments, gathering insight into the risk factors for MS, or enabling the development of approaches that help people with MS manage symptoms.
How does multiple sclerosis begin? This is the million-dollar question and the answer to this question could lead to the ultimate goal of ending MS. Every year the MS Society of Canada invests millions in research to support scientists working to figure out the cause of MS. While factors contributing to MS development and progression are slowly being discovered, a single cause of MS remains elusive. Recently, there has been a lot of talk in the news about a protein that is believed to be linked to be the cause of MS, but what’s the hype all about? I had a chance to review the article published in Journal of Neuroinflammation and noted some interesting findings.
For people living with relapse-remitting MS, 1993 was a turning point. Before then, the only relief available to people living with MS was with the use of relapse-management therapies like steroids, which were used to decrease the severity and duration of an MS relapse by suppressing inflammation, as well as symptom management therapies. However, no options were available that could modify the underlying disease course and prevent relapses from happening in the first place. All that changed in 1993, when the U.S. Food and Drug Administration (FDA) approved the first disease-modifying therapy beta interferon 1-b (Betaseron) for the treatment of relapsing forms of MS, ushering in the era of modern MS therapy. Following Health Canada’s own regulatory approval process, Betaseron was marketed in Canada in 1995.
Today the MS Society of Canada, along with Biogen Canada and Brain Canada, announced something that could change the way we understand, diagnose, treat and ultimately cure MS. I am excited to share the news with Canadians that a $7+ million study will be launched within a year, which focuses on studying progression in MS over time.
Each person living with multiple sclerosis (MS) experiences a different journey. Life with MS can sometimes be difficult, especially when the person faces depression, anxiety, disability and pain, which all impact their quality of life. So, when MS Society of Canada-funded researcher and MS neurologist Dr. Ruth Ann Marrie from the University of Manitoba and her colleagues decided to reach out to people living with MS to hear their views on physician-assisted death (PAD) (or medical assistance in dying)- it brought about some interesting data that warrants further understanding of the significant life challenges in MS that need to be addressed.
Each person’s gastro-intestinal system is home to trillions of bacteria collectively known as the gut microbiota. These tiny creatures are essential partners in good health, and in less than a decade MS researchers have gone from considering the gut microbiota to be a curiosity to gathering evidence that disruption of the gut’s natural bacterial balance is linked to MS. A powerful method of studying the gut microbiota is to investigate the gut microbiome – the genetic composition of the microbiota. Unresolved questions about the gut microbiome persist, such as: Do people with MS have different microbiome “fingerprints” than people without MS? Does the gut microbiome play a functional role in modifying MS risk and/or disease course? Does the gut microbiome represent a potential therapeutic target in MS? Leaders in the field of MS and gut microbiome research here at ACTRIMS 2017 presented some of the latest findings that tackle these questions.
Wild garden of the gut bacteria (Credits: Nicola Fawcett; Wikimedia Commons)
Team TBS (left to right: Abhinav Grover, Denez Zahra Bokhari, Muhammad Inzamam Tahir, Muhammad Tahsin Sharif)
As the holidays quickly approach us I wanted to take a moment to reflect on the incredible year that the MS community has had in terms of advances in research.
This year, the MS Society of Canada and MS Scientific Research Foundation announced the publication of a landmark clinical trial that they jointly funded over 15 years ago. The trial, led by The Ottawa Hospital’s Dr. Mark Freedman and Dr. Harold Atkins, propelled Canada to the forefront of stem cell research for MS, and is considered one of the most successful stem cell trials for MS to date.
Jennifer Molson, one of the patients who received the procedure that involved immunoablation and transplantation of hematopoietic (blood-forming) stem cells, has become a fervent advocate for stem cell research and continues to publically share her journey throughout and after the clinical trial. Publication of the results of the trial has heightened the MS community’s understanding of the applications that stem cells have for MS, and paved the way for ongoing research that will hopefully lead to stem cell treatments that can be broadly used to treat all types of MS.
This year the MS Society awarded funding for two new projects focused on translation of progressive MS research findings into potential treatments for people living with progressive disease, but also those who have relapsing-remitting MS who are at risk of transitioning to progressive MS. These projects involved collaboration with the Centre for Drug Research in Development, a non-profit drug develop research centre based on Vancouver that possess an inerdiplinary drug development team and fully integrated research facility.
Throughout the year the MS community voiced a deep interest in understanding the effects of environment and lifestyle on the cause, development and severity of MS. We heard questions such as, “does low vitamin D increase risk for MS?”, and, “if I have MS will taking vitamin D help to manage my disease and symptoms?” People also wanted to know if diet and physical activity can help to treat MS or curtail symptoms like fatigue, mobility impairment, spasticity and pain.
To address these questions and gaps, the MS Society announced funding for three wellness-focused research studies, which will involve a team-based approach between academic researchers and community-based organizations. We also awarded a $15,000 grant to a group of students from the University of Waterloo in Ontario named Team TBS (pictured above) that would enable them to develop a wearable device that transmits information about a person’s MS symptoms to an app. The goal is to use the data that is stored in the app to identify any trends or changes that could help one’s healthcare team make informed treatment decisions. The group is nearly done the project and is looking to launch the new technology in 2017.
Additionally, in March of this year, the MS Society brought together the world’s leading experts in vitamin D and MS, and hosted a one-day meeting in March in which they discussed the latest data on the relationship between vitamin D and MS. Based on their discussions, the expert panel developed a series of guidelines on vitamin D testing and intake that is currently under review before they are translated into recommendations for the general public. The hope is that these recommendations will not only inform people affected by MS how much vitamin D they can safely take and whether the data suggests that it can help with their disease, but also provide a more clear understanding of what vitamin D is and the role it plays in MS.
This year the International Progressive MS Alliance announced $18 million in funding for three large projects that will involve global networks of MS researchers. One of these projects will be led by Canadian imaging pioneer Dr. Doug Arnold from McGill University. I am very excited to see whether these projects lead and am confident that the collaborative effort that is being undertaken by each group is the best way to go in terms of expediting the search for new treatments for progressive MS.
Finally, this year could not have ended on a better note than with the 2016 endMS Conference. While it was a busy time of planning and preparations, I am sure I speak on behalf of my MS Society colleagues when I say that it was an amazing conference! I enjoyed hearing about the latest research in the MS, while interacting with MS researchers and clinicians who seemed just as enthusiastic. I saw many familiar faces, but also a lot of new faces which is encouraging as it tells me that the field is expanding and new trainees and investigators are joining the fight to endMS.
I was truly impressed by the intellect, innovation, maturity, professionalism and passion that was evident in each trainee platform and poster presentation that I witnessed throughout the week. I also enjoyed hearing the trainees answer questions from senior researchers and participate in lively discussions during the panels. Another favourite moment of the conference for me was HEAR MS Day. Over 70 people affected by MS came together to meet with the trainees and talk about what MS research means to them and what the impact of research is on their lives. The exchange of dialogue, stories, and perspectives around the room was inspiring for all of us who took part in it, and I hope that we can do more of these types of interactive workshops in the future!
These are only a few of the many noteworthy research moments that have made 2016 an exceptional year for research. It brings me a lot of hope to know that the MS research community is working hard to answer the complex questions about MS that still remain, while working with the clinicians to develop and provide tools for earlier detection, individualized treatment, and comprehensive care. I look forward to seeing the progress of these studies in 2017, and await the next major advances that will move the needle in our search for a cure.
On behalf of the MS Society I wish all of you Happy Holidays!
Now that the dust has settled from last week’s endMS Conference and the country’s top MS researchers have returned home to continue their amazing work, we can reflect back on the week and celebrate the coming together of so many great minds that have embarked on tackling the many unresolved questions about MS. In organizing the endMS Conference, we set out to bring researchers of all levels, at various stages of their careers, together in one room, to forge new collaborations and enrich each other and the field of MS research as a whole. Over the course of the conference, I was able to reconnect with old colleagues, make new friends and learn about all of the exciting developments in MS research that are currently happening across Canada and the rest of the world.