“This announcement marks an important milestone in MS research, and possible treatment options for people like me — living with progressive MS.”Continue Reading
Guest post by Cory Turner
We don’t get to pick when we’re diagnosed with multiple sclerosis, and like many others who’ve received the news, the timing for me wasn’t ideal. Having just moved to San Francisco a couple of years prior, my life was just finding its footing. My career was moving in the right direction – my wife was six months pregnant with our first child, and plans for a new home were on the horizon – life was good. It’s when double vision, and the associated unbalance invaded my world, made it clear that life for me and my family would begin to change. Agility and strength were now being replaced with fatigue and disruption, and my energy needed to be invested wisely. In 2005, feeling that something was off, my wife convinced me to go to the hospital where an ER doctor ordered a CT scan that quickly revealed spots on my brain. It was a fast diagnosis of relapsing-remitting MS that followed, which would develop into progressive MS as time passed. Surrounded by a flood of concern, this would represent the first of many forks in the road.
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By Chantal Milne
When I found out I was pregnant, I eagerly downloaded two pregnancy apps, bought three books on the subject and made it my morning ritual to get up and google, “Day X of pregnancy.”
The amount of information available to us these days is vast to the point of being overwhelming sometimes. When it came to the progress of my growing baby, I wanted to know everything. Every. Last. Detail. I’ve always been a curious person, and at a certain point, I started thinking about how stark a contrast the progression of my pregnancy was in relation to my MS progression. There are no apps to tell me how I’ll be feeling next month with MS, that’s for sure. There are the obvious differences, like getting to meet your wonderful new baby versus finding out you have an annoying scary disease, but this idea of progression and how we know so much about pregnancy, and so little about MS, it keeps me up at night sometimes – I need to know more.
MS is a journey I wouldn’t wish upon anyone. Receiving the diagnosis can feel like an uphill battle, once you know, then what? I have a great health care team, but not one of them can tell me with certainty how my disease will progress, or whether or not I’ll be able to walk into the room and present a candle-lit birthday cake to my daughter on her fourth birthday. I’m optimistic and I’ve got my disease under control, I think. There are just too many unanswered questions when it comes to MS disease progression.
I’ve found ways to deal with the anxiety of not knowing how my MS will impact me in the future, but I look at my daughter and I wonder how will I answer the questions she has? What if we knew what causes MS? What if someone could tell me how to stop my MS from progressing? What if someone could tell me if I would be walking in five years? Would that change how I live my life now?
When it comes to MS, for me, not knowing is half the battle. That’s why I’m so excited about the MS progression study results. I can’t prevent the onset of MS in my life, it’s too late for that, but what if in 10 years we can stop it from progressing? What if we knew why my MS is different from the guy down the street? What if we could stop relapsing remitting MS from turning into secondary progressive MS, or better yet, end MS altogether!
I am hopeful, I am confident and I know that we can do this. We’ve got the world’s best MS clinicians and researchers working to answer these questions. By the time my daughter is old enough to ask me what MS is, maybe – just maybe – there will be an answer. That’s where I want my MS journey to go, and the MS progression study is giving me a road map to get there.
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Last fall we attended Canada’s first university-organized medical hackathon – a 36-hour event called Hack4Health at the University of Waterloo. We awarded $15,000 to the winning team to help them develop their idea for a tech-based wellness solution aimed at improving quality of life for people living with MS.
Team Tera Bio Solutions (TBS) claimed the prize. Its members, hailing from all over the globe and ranging from 19-21 years old, are Denez Zahra Bokhari, Muhammad Tahsin Sharif, Abhinav Grover, and Muhammad Inzamam Tahir.
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“Are you sure I can’t offer you tea?”
Mrs. Bokhari, standing in the lobby of a high rise on the edge of Waterloo, ON, is mother to Denez (21), whom my colleague Stephanie and I do not want to make late for work. We assure her that we are well caffeinated and follow Denez to one of many University of Waterloo labs, where she spends most of her time as a biology student studying medicine.
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Still, knowing what I know now, I would do it all over again.
I won’t sugar coat this: the trial was hell. For three years, between 2002 and 2005, my life was a series of questions, tough decisions, and uncertainties. My body didn’t feel like my own. At one point I was taking 129 pills a day, and my stomach lining was so eroded that I couldn’t keep food down for a year. Destroying your immune system is no easy feat. (more…)
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Multiple sclerosis is a deeply personal disease. No two people experience MS in exactly the same way, and while the underlying autoimmune event that attacks myelin is consistently at the core of the MS disease process, the signs, symptoms, and progression of the disease can vary enormously from person to person.
Ongoing research is helping to expand the arsenal of treatment options for MS, while placing greater emphasis on a more personalized approach to treating the disease. The publication of the results from the Canadian Bone Marrow Transplantation (BMT) trial in The Lancet represents the culmination of an extensive and collaborative effort funded by the MS Society of Canada’s affiliated Multiple Sclerosis Scientific Research Foundation (MSSRF) to identify a potential treatment for MS involving stem cells. The trial involved a procedure in which selected volunteers living with MS were given high-dose chemotherapy to dismantle the disease-causing immune system, followed by transfusion of their own stem cells to rebuild a healthy immune system that no longer attacks myelin. Given the risks associated with the procedure, individuals who were selected for the trial were those experiencing highly aggressive, inflammatory relapsing-remitting MS that did not respond to available treatments.
The study, titled “Immunoablation and autologous haemopoietic stem-cell transplantation for aggressive multiple sclerosis: a multicentre single-group phase 2 trial”, was led by Drs. Harry Atkins and Mark Freedman at The Ottawa Hospital. Drs. Atkins and Freedman noticed that, following transplantation of the stem cells, the participants showed remarkable improvements in disease course which were maintained over a long period of time. These improvements included the absence of new relapses and inflammatory brain lesions and, in some cases, lasting recovery of function.
Read more about this treatment approach on Dr. Karen Lee’s blog.
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I’m Dr. Steven Kerfoot, MS researcher and MS Bike participant. I’m proud to say this is my second year riding in the Grand Bend to London MS Bike. Most of the MS Bike participants I’ve talked to hope and believe that their efforts will improve the lives of people affected by MS—and ultimately find a cure for the disease. As a researcher, I participate in the ride hoping and believing the same things.
We scientists have learned a lot about MS since I started doing research as a graduate student in immunology. MS is a complicated research subject, as it combines the immune and nervous systems, the two most complex systems in the body. Nevertheless, research has led to huge differences in quality of life for people living with MS in just the last few years: diagnosis happens more quickly, and we now have real treatment options that, for many, limit disease progression and disability. We still have a lot of questions about how the immune and nervous systems work and what goes wrong in MS, and we don’t always know where the answers will come from.
After graduate training in MS-related research, I moved to Yale University to study a type of immune cell called the B cell. At the time, we didn’t think that B cells were very important to MS. During my time in the US, however, there were major advances in our understanding of basic B cell biology, and new and exciting research made it clear that B cells were more important to MS than we had thought. Funding from the MS Society brought me back to Canada to investigate how B cells interact with other immune cells to cause MS. Check out our website if you’d like to learn more.
When I ride as a researcher working on questions related to MS, I’m getting on my bike as a (sweaty) representative of the research we are all raising money for. I want to encourage my fellow participants in their ride by reminding them how far research has brought us so far. It’s also a chance for me to tell them that I appreciate their efforts to support my work.
This year’s Grand Bend to London MS Bike was a great couple of days, and my team really enjoyed meeting other riders and volunteers. Next year, we’d like to be wearing some jerseys that let people know we’re MS researchers—so you can ask us about what we’re doing.
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I’m Dr. Karen Lee, vice-president of research for the MS Society. You can read more from me about Canadian MS research here, but I’m pleased to also be writing a special announcement for this blog—I have some exciting news to share.
This week the MS Society of Canada and its affiliated MS Scientific Research Foundation announced a $3.2 million grant to study pediatric MS, which is multiple sclerosis in children and adolescents. Dr. Brenda Banwell—renowned Canadian MS neurologist, chief of neurology at The Children’s Hospital of Philadelphia, and adjunct scientist at The Hospital for Sick Children (SickKids)—will lead a collaborative study with 19 pediatric health care and research institutions across Canada. Here’s a video of Dr. Banwell discussing some of the primary goals of this fulsome study:
What I think is most exciting about this study is how much it can tell us about various aspects of MS, both in children and in adults. The comprehensive nature of the study will open a window to more knowledge about the earliest triggers of the disease, which could lead to early detection of MS in adults.
I’m also always encouraged by collaborative studies, as they are heavily focused on the sharing of information between many researchers at several sites. The more people contributing to a research study, the more likely it is that the goal of the study will be achieved through collaboration.