Dr. Karen Lee's Blog https://drkarenlee.ca An Inside Look at MS Research Wed, 22 Nov 2017 19:15:19 +0000 en-US hourly 1 https://wordpress.org/?v=4.6.8 120353486 Researchers at #MSParis2017 talk about the factors regulating the Blood Brain Barrier in MS https://drkarenlee.ca/researchers-at-msparis2017-talk-about-the-factors-regulating-the-blood-brain-barrier-in-ms/ https://drkarenlee.ca/researchers-at-msparis2017-talk-about-the-factors-regulating-the-blood-brain-barrier-in-ms/#respond Wed, 22 Nov 2017 19:15:19 +0000 https://drkarenlee.ca/?p=1655 BBBThe blood-brain barrier (BBB) was highlighted in a session at the #MSParis2017 conference where researchers presented their recent findings on the relationship between the BBB and MS. The BBB is a network of cells (called endothelial cells) that line all the blood vessels in the brain. These cells are so tightly connected that they prevent harmful substances such as bacteria and toxins from entering the brain and spinal cord (collectively called the central nervous system or CNS).  In MS, the BBB is compromised and becomes leaky, allowing white blood cells from the immune system to pass through the barrier and enter the CNS. The white blood cells then attack myelin (the coating around the nerve cells in the CNS) which results in inflammation and lesions. Many research teams are examining what causes the BBB to weaken and ways to prevent this from happening.

Dr. Alexandre Prat: DICAM is a novel molecule that promotes the migration of harmful immune cells to the brain and spinal cord

MS Society funded researcher, Dr. Alexandre Prat from Centre de Recherche du Centre Hospitalier de l’Université de Montréal, talked about the factors that may regulate the movement of white blood cells from the blood to the CNS. One of these factors is the presence of cell adhesion molecules (CAMs) which are proteins found on the surface of immune cells that enable them to adhere to and cross over the BBB.  Dr. Prat and his research team have discovered a specific CAM, called DICAM, that may assist in orchestrating immune cells to accomplish this invasion. DICAM was found in the tissues of people with RRMS and is associated with the production of pro-inflammatory factors on white blood cells. Furthermore, Dr. Prat showed that reducing the quantity of DICAM prevented the migration of harmful immune cells into the CNS and hence delayed the onset of disease in a mouse model of MS. The data presented by Dr. Prat identified DICAM –a novel molecule that is found on white blood cells that promotes their migration across the BBB and into the CNS, where they cause damage.

Elizabeth Gowing: integrin α8 is a protein that is involved in facilitating the migration of immune cells into the central nervous system.

We also heard from Elizabeth Gowing – a PhD student in Dr. Alexandre Prat’s lab and the recipient of an MS Society PhD studentship award. Her research looks at proteins called integrins which facilitate the migration of cells across the BBB. She discovered a specific integrin, called integrin α8 is involved in several ways.  Gowing’s work shows integrin α8 (1) is linked to an increased quantity in pro-inflammatory immune cells, (2) is found in active MS lesions in the CNS, and (3) blocking integrin α8 decreases the migration of harmful immune cells into the CNS of mice that have MS like disease.

A member of my team also had a chance to talk to Elizabeth Gowing at the conference to find out a bit about what motivated her to get involved in research in MS and more about her project. Here is their conversation (8:14 minutes):

 

Catherine Larochelle: epidermal growth factor-like protein 7 (EGFL7) is a novel protein player that limits the infiltration of pro-inflammatory immune cells in MS

Following in the footsteps of her doctoral supervisor, Dr. Alexandre Prat, Dr. Catherine Larochelle, now a scientist at the Université de Montréal, examined the role of epidermal growth factor-like protein 7 (EGFL7) in regulating the migration of immune cells in MS. EGFL7 was previously demonstrated to enhance endothelial cell (cells lining the BBB) survival under stressful conditions. Dr. Larochelle discovered that EGFL7 can limit the amount of CNS infiltration of pro-inflammatory immune cells into the CNS by promoting BBB integrity and securing activated immune cells to the perivascular space (space that spans between blood vessels and brain matter) to prevent their migration into the CNS. Therefore, Dr. Larochelle believes that EGFL7 could represent a new therapeutic target in MS.

The studies presented at this session are important steps to finding out more about the BBB so that future studies can focus on how the BBB can be strengthened to prevent immune cells from entering the CNS, ultimately putting a halt on progression.

Have any questions or comments? Leave them below!

 

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Bonjour Paris! World’s leading researchers and clinicians gather in Paris for largest MS conference https://drkarenlee.ca/bonjour-paris-worlds-leading-researchers-and-clinicians-gather-in-paris-for-largest-ms-conference/ https://drkarenlee.ca/bonjour-paris-worlds-leading-researchers-and-clinicians-gather-in-paris-for-largest-ms-conference/#respond Wed, 25 Oct 2017 13:28:01 +0000 https://drkarenlee.ca/?p=1646 Palais Des CongresThe MS Society of Canada’s research team has arrived in the exciting city of Paris, France to attend the 7th Joint ACTRIMS/ECTRIMS meeting from October 25-28, 2017. Paris tidbit: Jean Martin Charcot, who identified and named multiple sclerosis (la sclérose en plaques), is from Paris, France. The ACTRIMS/ECTRIMS Congress is the largest international meeting devoted to scientific research and health management of multiple sclerosis, and each year the list of topics and number of participants grows.

With over 9,000 participants from over 100 countries attending the meeting with a record number of abstracts at 2,080, the conference is bound to provide the latest information in research and clinical trial outcomes. Themes for this year’s meeting include the revised diagnostic criteria, biomarkers in MS, neuroimmunology, symptom management in MS, and emerging strategies to promote repair, just to name a few.  Selected abstracts will be presented throughout the week at poster sessions (researchers showcase their data on posters and engage in discussions) and scientific sessions (presentations that are delivered to a larger audience). The conference also includes smaller workshops and education sessions for nurses, junior neurologists in training, and media.

The conference is a great platform for announcing breaking news in MS research and treatment, and provides an opportunity for researchers, clinicians and trainees to share the hottest data from their laboratories.

This year the research team will be delivering live updates throughout the week via Twitter(@Dr_KarenLee), Facebook (Multiple Sclerosis Society of Canada), and my blog. We are excited to hear about the latest advances in MS and report it to our MS Community.

Stay tuned for more updates and feel free to leave questions or comments below.

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Diet and MS: What does research tell us about supplements? https://drkarenlee.ca/diet-and-ms-what-does-research-tell-us-about-supplements/ https://drkarenlee.ca/diet-and-ms-what-does-research-tell-us-about-supplements/#comments Mon, 02 Oct 2017 13:15:53 +0000 https://drkarenlee.ca/?p=1635 A question I frequently receive is: “Are there supplements I can take to manage my MS?” MS impacts the day-to-day lives of those living with the disease, so it’s no surprise that many individuals explore complementary and alternative medications (CAMs) to take control of their MS. CAMs are approaches that come from a variety of traditions and practices, including exercise, natural health products, supplements and vitamins. In addition to helping in the management of MS, CAMs are used by Canadians to enhance their overall wellness.

There are a variety of small studies that have looked at the role of CAMs in MS, however their effects are unclear. One area that is growing in interest are the role of supplements as potential treatments. In this post, I will touch on three supplements that have recently gained some traction among the MS research community – vitamin D, biotin, and lipoic acid.

  1. Vitamin D

sunVitamin D has been a hot topic in MS research. Referred to as the “sunshine vitamin”, vitamin D is produced by our skin through sun exposure, but can also come from other sources like supplements and diet (eggs, fish and fortified dairy products). Vitamin D works to help absorb nutrients, particularly calcium, and more recently vitamin D has been investigated for other proposed health benefits.

So, how did vitamin D get linked to MS? Well, we know that MS is more common in countries farther away from the equator, therefore, researchers have become interested in the role that sunlight, and hence vitamin D, could play in MS.

We are still learning about the association between vitamin D and MS, with research groups worldwide assessing the role of vitamin D in the onset, progression, and treatment of MS.

What research tells us thus far?

In recent years, some observational studies of individuals with MS have identified a link between vitamin D deficiency and increased risk of developing MS. One large study of 200,000 women who took part in the Nurse’s Health Study found that intake of 400 International Units (IU- describes the potency or biological activity of a product) daily of vitamin D was associated with a 40% lower risk of MS. Another prospective study found that higher levels of vitamin D in the blood (also known as your vitamin D status) during late adolescence or early adulthood were associated with a lower risk of developing MS later in life.

While there appears to be an association between vitamin D status and risk of MS, it is less clear whether vitamin D supplementation can improve disease outcomes in people living with MS. Clinical trials comparing vitamin D treatment versus placebo, or high-dose vitamin D treatment versus low-dose vitamin D treatment, found no significant effects in terms of improved MS outcomes. Other studies, however, demonstrated modest benefits of vitamin D treatment in various disease outcomes such as lesion sizes, immune activity etc.

One major study that is currently ongoing is led by Dr. Ellen Mowry at Johns Hopkins University. This phase III clinical trial is anticipated to enroll 172 individuals with relapsing-remitting MS, and will examine if a high-dose vitamin D intervention will alter the number of relapses compared to low-dose vitamin D. Another phase III clinical trial, anticipated to enroll 316 participants and led by Dr. Eric Thouvenot at the Centre Hospitalier Universitaire de Nimes, is examining if administration of vitamin D compared to placebo will reduce the conversion to MS after individuals have experienced their first symptoms relating to MS.

In addition to these ongoing major trials, there are a handful of studies that have been conducted with mixed results. The SOLAR trial, which involved 260 people with relapsing-remitting MS, tested the effects of vitamin D supplementation as an add-on treatment with interferon beta-1a (Rebif) on MS outcomes, versus placebo. The data so far shows no significant effect of vitamin D supplementation on relapses, disease activity and disability, although the individuals in the vitamin D group did have fewer number of  lesions as seen on MRI compared to placebo. Another small study involving 40 people with relapsing MS found that taking 10,400 international units (IU) of vitamin D every day for six months reduced the number of certain immune cells that are known to cause damage in MS.

For more studies on vitamin D and MS, check out our vitamin D hot topics page.

2.       Biotin /MD1003

BiotinBiotin, also known as vitamin B7 or vitamin H, is essential for breaking down proteins, carbohydrates and fats into forms that the body can use. Biotin, which can be obtained from foods such as eggs, almonds, nuts and legumes, is important for the maintenance of healthy skin, hair, eyes, liver, and nervous system functioning. Additionally, biotin deficiency is common in pregnant women, and thus women who are expecting are advised to take biotin or a multi-vitamin containing biotin.

Biotin has become of interest to the MS community due to its advancement up the clinical trial ladder where it is now being examined in phase III clinical trials by French pharmaceutical company MedDay. Interestingly, they are looking at a new pharmaceutical formulation of biotin which is 10,000-fold higher in dose than what is available over the counter. The compound is called MD1003.

What research tells us thus far?

The first of two clinical trials sponsored by MedDay is MS-SPI. This randomized, double-blind, placebo-controlled phase III trial involved 154 participants with primary and secondary progressive MS who received either MD1003 or placebo over two years. Researchers found that treatment with MD1003 resulted in a significant improvement in disability compared to placebo treatment.

The second phase III clinical trial, SPI2, is underway to test MD1003 treatment compared with placebo.  Currently, recruitment is ongoing in multiple countries, including Canada, with the estimated enrollment of 600 participants with primary and secondary progressive MS. The U.S. Food and Drug Administration (FDA) wanted a study in the U.S. population which prompted the launch of the SPI2 trial. This global study will confirm the findings of the MS-SPI trial but will also include additional measures on the safety and efficacy of MD1003.

MD1003 is also being investigated in a phase III clinical trial, called MS-ON, to see if it can improve the sight in participants with chronic visual loss from MS-related optic neuritis.

Although considered a vitamin in low doses, more information is needed on the long-term efficacy safety of taking ultra-high doses of biotin for a prolonged period of time.

  1. Lipoic Acid

LALipoic acid is an over-the-counter supplement known to have antioxidant properties. Antioxidants block the action of “free radicals”, which are by-products of the body that cause tissue injury in MS. In addition to supplements, lipoic acid can also be found in foods such as spinach, broccoli and potatoes.

Controlled trials are currently ongoing to test the potential of several antioxidants in MS, including lipoic acid.

What research tells us thus far?

While research on the role of lipoic acid as a treatment for MS is in the early stages, there are a few small clinical trials, mainly in phase I and II, that are testing the safety and efficacy of lipoic acid in people with MS.

A single-site, phase I clinical trial led by Dr. Daniel Carr at the Portland VA Medical Center and Oregon Health & Science University enrolled 69 SPMS patients, RRMS patients or healthy individuals to observe how lipoic acid (1200 mg) is broken down in the body.

Following this study was a single-site, double-blind phase II clinical trial led by Dr. Rebecca Spain and her colleagues at the Oregon Health and Science University, which involved 51 individuals who received either oral lipoic acid (1200 mg) or placebo daily for two years. The results showed that participants who received lipoic acid had a 68% decrease in the rate of brain volume loss compared to individuals on placebo.

Another phase II clinical trial led by Daniel Carr was completed this year and aimed to determine if the combination of lipoic acid and omega-3 fatty acids improve cognition in RRMS or SPMS compared to placebo treatment.  Thus far, the results did not show changes in cognition after 12 weeks of treatment.

While research is pointing to promising outcomes among people with MS who take supplements as treatments, it’s important to note that such studies are small and serve as critical starting points for larger research studies. Clinical trials such as those described above are important avenues to better understand the benefits and safety of supplements in MS, especially those which are administered at very high doses. It is important to discuss your treatment options with your healthcare team, as this decision is based on a number of factors.

Interested in learning about more supplements, diet and other CAMs, leave us a message below.

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Why #BurgersToBeatMS is critical to advancing research in Canada https://drkarenlee.ca/why-burgers-to-beat-ms-is-critical-to-advancing-research-in-canada/ https://drkarenlee.ca/why-burgers-to-beat-ms-is-critical-to-advancing-research-in-canada/#comments Thu, 24 Aug 2017 14:51:15 +0000 https://drkarenlee.ca/?p=1620  

20900550_10155863739382494_8699766386079112798_oBurgers 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:

OG_Profile_2017-2018_Kolind_3031Shannon Kolind from the University of British Columbia was awarded nearly $300,000 for her imaging research. A common tool used for the diagnosis and monitoring of MS is magnetic resonance imaging (MRI). Recently, MRI has been used to not only identify MS but track its progression. Researchers look at changes in brain volume using MRI to determine if progression is occurring, however this can take over a year to confirm and is not always accurate. Dr. Kolind’s research team wants to explore if the loss of myelin, the protective covering over nerve fibers, could be a better predictor of progression and thus could serve as a biomarker. Using imaging, Dr. Kolind plans to measure structural changes in myelin in the hopes of identifying individuals with MS who are at risk for progression, and reduce the time required for progressive MS trials.

GSRobertsonDr. George Robertson from Dalhousie University was awarded over $300,000 to examine whether nine drugs that are used to treat other diseases may have benefits for MS, specifically mobility. To achieve this, Dr. Robertson will administer these drugs to mice with an MS-like disease and observe their movement while they are using a treadmill. He will  perform a detailed analysis of gait parameters such as joint movement and ankle movement. The goal of this work is to develop a tool that can identify promising therapies that will improve mobility in individuals with MS.

 

 

Rotstein-DaliaDr. Dalia Rotstein from the University of Toronto was awarded over $150,000 to study rates of MS amongst immigrants to Canada to better understand why Canada is one of the highest risk regions for MS in the world. Immigrants are thought to be at lower risk for developing MS than people born in Canada, but their risk is still believed to be higher than that in their native countries. Dr. Rotstein’s work will lead to the creation of one of the largest and most diverse cohort of immigrants with MS. By studying this unique group of individuals, Dr. Rostein will inform the creation of tailoured health care strategies for immigrant populations with MS, while also providing important insights into risk factors for MS in general.

These are only a few of the many studies funded by the MS Society that are advancing our understanding and management of MS. Fundraising campaigns like Burgers to Beat MS are imperative to ensuring the success and of this work and creating a strong and talented network of MS researchers in Canada. I hope that all of you will grab a Teen Burger® today to continue supporting the advancement of MS research in Canada.

Leave a message on what research area is important to you.

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Hack4Health team Roze receives MS Society funding to develop new fatigue management resource https://drkarenlee.ca/hack4health-team-roze-receives-ms-society-funding-to-develop-new-fatigue-management-resource/ https://drkarenlee.ca/hack4health-team-roze-receives-ms-society-funding-to-develop-new-fatigue-management-resource/#respond Mon, 26 Jun 2017 12:48:35 +0000 https://drkarenlee.ca/?p=1603 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)

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.

Tell me a little about yourself and what motivated you to participate in Hack4Health?

Tina: I am a master of science candidate at University of Waterloo School of Public Health and Health Systems. This was an event run by my faculty and I thought it was a good opportunity to learn about dementia, MS, and other neurodegenerative diseases. It also gave me an opportunity to work with a team of great people.

Rui: I am currently pursuing a doctor of pharmacy at the University of Waterloo. I worked in many community pharmacies as well as a cancer centre in Toronto. I am really passionate about health care as well as the intersection of technology and health care and how that can improve patient outcomes.

Marium: I just finished my bachelor of health sciences degree at the University of Waterloo with a specialization in health informatics. I participated in Hack4Health because it provides an environment to find practical solutions to health-related problems.

Lori-Ann: I am currently working full time in downtown Toronto for a company that develops software for the life sciences industry. The reason why I did Hack4Health was because I like how it combines technology and health. Being at the hackathon, I could easily connect with people who had MS and could use my skills to create a more direct impact.

What is your project and how will your project help people with MS and the MS community as a whole?

Tina: At Hack4Health, we proposed a platform that would help young women living with MS. During the hackathon we did some research and realized that women, especially around the age of 30, were not represented in the literature. As young women, we thought about what we would want if we were diagnosed with MS. We thought about things that are in our lives and the popularity of mobile applications and gaming. So, we decided to combine the two and see if we could gamify something to help young women manage MS symptoms, specifically pain and fatigue.

Rui: I think the number one thing we are focused on is to see if the mobile app is feasible and receptive for women with MS. If this framework is validated, it can open doors for other similar technologies to be used for other diseases in addition to MS.

What do you hope the outcome will be for women living with MS once they are able to use the app?

Marium: I think the primary outcome we are hoping to achieve is an improvement in the day-to-day lives of women living with MS.

Tina: We are also hoping to motivate women to be more physically active and I think our gaming app will do just that.

Based on your initial research on MS, have you thought about the type of routines that will be part of your platform?

Rui: Physical activities such as yoga and dance are currently used as fatigue management strategies, but because these activities are only available at scheduled times and quite infrequently, it makes it difficult for young women who are juggling a career and family to find time to participate. So, our project aims to include these and other activities in an app, and gather input from occupational therapists and physiotherapists, to ensure that such activities can be performed in the comfort of one’s home and at their own time.

Where did the team name Roze come from? Does it relate to the project?

Marium: We are looking to create an app for women with MS, so we picked a team name that had a more feminine meaning. We want women to feel empowered and feel that they “Roze” above the challenges of living with MS.

What are your plans moving forward after the completion of the mobile platform? How will the platform be tested and rolled out? 

Lori-Ann: We are planning to meet with people in the industry who are experienced in developing health-related apps. This will give us insight into the challenges involved with creating a gaming app. We hope to do this task in parallel to developing a prototype of the app and identifying the needs and interests of women living with MS.

Tina: Our long-term goal is figuring out how to bring the product to market. This may be through cooperation with an industry partner or creating a venture of our own.

What do you anticipate will be the biggest challenge?

Tina: We know apps and new technology go through phases of trends. A challenge we are anticipating is how to keep users engaged in the app long-term.

What do you hope to learn through the development of this app? Or what have you learned about MS?

Lori-Ann: Although we have already delved into research and identified existing support systems available for people with MS, it’s going to be really exciting to see firsthand the impact that this gaming approach has on the lives of individuals with MS.

Check out Team Roze’s Facebook page. Do you have questions or comments about Hack4Health or research involving MS and wellness? Leave them below.

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World MS Day 2017: Highlighting research that aims to make life with MS better https://drkarenlee.ca/world-ms-day-2017-highlighting-research-that-aims-to-make-life-with-ms-better/ https://drkarenlee.ca/world-ms-day-2017-highlighting-research-that-aims-to-make-life-with-ms-better/#respond Wed, 31 May 2017 12:43:36 +0000 https://drkarenlee.ca/?p=1592 Logo_HZ_-colour_2017EN

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.

#Lifewith MSWith 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.

The MS Society continues to invest in research that helps individuals with MS improve their quality of life. Some of this innovative research comes from our wellness platform, which highlights the need for more research in MS and nutrition, physical activity and emotional wellbeing.

The MS Society’s MS Wellness Survey, launched in 2015, prompted the design of funding opportunities that address unmet needs in wellness as identified by people affected by MS. The Hermès Canada I MS Society Wellness Research Innovation Grant competition and the Hack4health Wellness Project were among these new funding opportunities. Let me give you a quick update on both of these initiatives:

  1. Hermès Canada I MS Society Wellness Research Innovation Grants
  • Ann Yeh from the Hospital of Sick Children in Toronto set out to develop a mobile app to increase physical activity levels in youth living with MS. Based on interactions and input with teens with MS, exercise physiologists, neurologists, occupational therapists and mobile app developers the team is currently working to implement and integrate all the recommendations into a well-functioning mobile app.
  • Katherine Knox from the University of Saskatchewan launched a project aimed to provide better access to physical activity for people living with moderate to severe MS-related disabilities. Together with a team of physiotherapists and feedback from the MS community, Dr. Knox is testing a web-based physiotherapy tool to help people with MS manage their disease irrespective of geographical and economical barriers. The team is currently recruiting participants to test the web-based physiotherapy program.
  • Charity Evans from the University of Saskatchewan wanted to determine if a Pilates program would have an impact on #LifewithMS. In collaboration with Pilates instructor and community wellness leader Jana Danielson, Dr. Evans plans on looking at changes in walking ability, balance and quality of life after a 12-week Pilates program. The team has completed recruiting participants that are currently partaking in the Pilates program.
  1. Hack4Health
  • In the first University of Waterloo health-focused hackathon called Hack4Health, Team TBS was awarded a grant in 2015 from the MS Society, to develop a wearable device that would transmit information about a person’s MS symptoms to an app. Last year, Team Roze was selected in the second annual Hack4Health competition for their fitness app for women with MS- stay tuned for more details on the newly awarded Hack4health team and details about their project. Both teams have received a $15,000 grant from the MS Society of Canada – one of the top prizes at Hack4Health – to develop their MS wellness technology with a University of Waterloo faculty member.

Beyond the targeted wellness projects, we were pleased to see researchers and trainees that received funding from the MS Society’s 2017 Annual Research Competition focusing on research that seeks to improve the quality of life for people living with MS. Here are some highlights:

  • Marcia Finlayson from Queen’s University is working on a web-based fatigue management resource for individuals with MS. She is interested in seeing if this resource can improve cognitive function, and reduce depression.
  • Samantha Stephens from The Hospital for Sick Children plans to figure out if exercise is effective in reducing symptoms such as walking ability, relapse rates and quality of life for children with MS.
  • Justin Chee at University Health Network is working to develop a walking device that can detect changes in walking patterns, provide feedback about walking performance, and automating communication with local transportation.

Join the conversation about World MS Day and share with us your story on #LifewithMS in the comments below or on our communities on FacebookInstagram, and Twitter.

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New protein causing MS: Hope or Hype? https://drkarenlee.ca/new-protein-causing-ms-hope-or-hype/ https://drkarenlee.ca/new-protein-causing-ms-hope-or-hype/#respond Wed, 10 May 2017 19:12:24 +0000 https://drkarenlee.ca/?p=1585

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.

Here is the quick breakdown:

  • Researchers from the Universities of Exeter (UK) and Alberta found higher than normallevels of a protein called Rab32 in the brains of people with MS.
  • It is thought that elevated Rab32 protein may be associated with the dysfunction of mitochondria. Mitochondria are structures in our cells which are responsible for energy production throughout the body, enabling cells to function. Therefore, it is no surprise that when there is no energy present, a cell cannot function and often dies.

    A structure found in a cell: Mitochondria Credits: “mitochondria” Erin Hass/ CC BY 2.0

    A structure found in a cell: Mitochondria
    Credits: “mitochondria” Erin Hass/ CC BY 2.0

  • Because mitochondria play an important role in the cell, many scientists have looked deeper at these structures and found that they contribute to neurodegenerative (death of brain cells) diseases such as Alzheimer’s and Parkinson’s disease. Now this link expands to MS as well.
  • The researchers found that nerve cells and immune cells called microglia had higher quantities of Rab32 protein within MS lesions, which corresponded to changes in mitochondria that resulted in cell death.
  • These key findings provide a clue around the underlying causes of neurodegeneration in MS, which is especially important for individuals with progressive MS and those who are at risk of transitioning to secondary progressive MS.
  • It also helps us further understand the theory of energy exhaustion as a potential mechanism for nerve damage in MS and players that contribute to it.

So did they find the cause of MS?

These finding have gained significant media attention, but it’s important to note that this research is still in the preliminary stages (cell and animal research), and additional work is required to understand the applications of the research to the treatment of people with MS. However, the study represents an important step in enhancing knowledge on the cause of MS and the pathways that lead to neurodegeneration in MS.

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First drug for treatment of Progressive MS Approved by the FDA https://drkarenlee.ca/first-drug-for-treatment-of-progressive-ms-approved-by-the-fda/ https://drkarenlee.ca/first-drug-for-treatment-of-progressive-ms-approved-by-the-fda/#comments Wed, 29 Mar 2017 13:32:47 +0000 https://drkarenlee.ca/?p=1573 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.

Credits: "approve" by hobvias sundoneighm / CC BY 2.0

Credits: “approve” by hobvias sundoneighm / CC BY 2.0 <https://creativecommons.org/licenses/by/2.0/>

Since that seminal year, 13 more disease-modifying therapies have been approved for the treatment of relapsing forms of MS. People living with relapsing forms of MS not only have access to treatments; they also have treatment options, including alternatives to injections with oral therapies, reduced dosing schedules, and alternatives in cases of unresponsiveness or intolerance to another therapy.

On the other hand, effective treatments for progressive forms of MS have been far more elusive. The search for progressive MS treatments has been affected by several notable challenges, including properly defining progression, understanding the mechanisms responsible for the accumulation of disability, and coming up with reliable biomarkers for measuring progression and response to treatment for use in clinical trials.

Just like in 1993, the tide is beginning to turn, and the treatment era for progressive forms of MS is finally upon us. On March 28, 2017, the FDA announced its approval of Ocrevus™ (ocrelizumab) for the treatment of both primary progressive and relapsing forms of MS in the US. This announcement has come on the heels of considerable anticipation that has been building since results from the ORATORIO clinical trial were first presented at the European Committee for Treatment and Research in MS (ECTRIMS) Congress in Barcelona in 2015 and then later published in the New England Journal of Medicine. The results showed that Ocrevus, developed by Genentech (Roche), eliminates harmful white blood cells called B cells that leads to a modestly but significantly reduced risk of progression of clinical disability compared to treatment with a mock drug.  Other benefits of Ocrevus include a long-term reduction in the proportion of people that progress in their  disability, decreasing the size of brain lesions, and reducing the rate of brain shrinkage.

Based on the promising results of the ORATORIO trial (not to mention the OPERA I and OPERA II trials, which showed dramatic improvements in reducing relapse rates compared to interferon beta-1a in participants with relapsing forms of MS), the FDA fast-tracked the approvals process of Ocrevus to ensure it would be completed by the first quarter of 2017. While this can seem like an eternity for people who have been waiting years or decades for a breakthrough, it is encouraging to see that clinical trials for progressive forms of MS have begun to make a striking impact on the treatment landscape and are becoming a top priority for regulatory bodies.

What does this news mean for Canadians living with primary progressive MS? We do know that Genentech has submitted a drug marketing application for Ocrevus to Health Canada. FDA approval only covers marketing of a drug in the United States, and Health Canada needs to conduct its own review of data related to a drug before deciding to market a new drug in Canada. We’ll be keeping a close eye on the status of Ocrevus’ application to Health Canada – in the meantime, take a look at our Frequently Asked Questions which we will be keeping up-to-date with the latest news.

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Multi-million dollar initiative launched to study the progression of MS https://drkarenlee.ca/multi-million-dollar-initiative-launched-to-study-the-progression-of-ms/ https://drkarenlee.ca/multi-million-dollar-initiative-launched-to-study-the-progression-of-ms/#comments Tue, 28 Mar 2017 13:08:37 +0000 https://drkarenlee.ca/?p=1567 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.


This announcement of the call for proposals to develop the Canadian MS Progression Cohort was welcomed with a flood of excitement by the MS community, but a lot of work remains and it will take several years before results from this large-scale study are generated. The study will begin in early 2018 and will be conducted by a team of researchers from across Canada that will competitively be selected. The successful team will examine people living with MS in Canada over a minimum of 5 years. With the generous support from our funding partners Biogen Canada and Brain Canada who are each contributing more than $2 million to the project, and with the remarkable contributions of over $2 million from PCL Construction and Bennett Jones LLP, the team will have the resources to build infrastructure that will enable to them to study progression from biological, lifestyle, and real-world perspectives. The Canadian MS Progression Cohort is a unique opportunity to observe the ways in which people living with all forms of MS progress in their disease, in order to pinpoint the exact triggers of progression and establish tools that can detect and monitor those triggers.

cohort 1This project marks a major milestone for the Canadian MS research and medical communities, as it is the first of its kind in the country that will address why certain people with MS progress in their disease and others do not, or why the rate of progression is faster for certain individuals and how that progression impacts them, their family and communities. The research team will investigate biological changes that occur during progression, the effects of treatments on disease progression, real-world health outcomes, socioeconomic impacts, and many other factors. This initiative will not only generate one of the most comprehensive MS databases, but will also encourage coordinated and collaborative research effort across Canada, engage the voice of people living with MS, and build an open resource that will not only benefit the Canadian MS research community but also researchers who look at other neurological diseases.

As news of this initiative was made public today, the shared feeling in the room was one of optimism for the future, as the results from this study could provide insight into elements of the disease that haven’t been investigated at a level of this magnitude before in Canada. We heard from Chantal Milne (diagnosed with MS in 2012), who took the podium and profoundly moved the crowd with her inspiring words. She spoke not only to what this study could mean for her, but also for her daughter and future generations of Canadians. “I am hopeful, I am confident, and I know we can do this. With some of the world’s best MS clinicians and researchers involved in this study, maybe by the time my daughter can ask me about what MS is and how it will impact me – maybe, just maybe – I will have the answer. That is where I want my MS journey to go, and the MS progression study is giving me a road map to get there,” says Chantal.

The importance of long-term interdisciplinary studies like the Canadian MS Progression Cohort are instrumental in finding connections and patterns between groups of people that may not have been distinguishable when examined in isolation or over a short period of time. The ability to collect and analyze different types of biological, clinical and real-world data from many different people living with MS provides a substantial opportunity for answers in a field of study where there are still so many uncertainties. Progression remains one of the complex, unaddressed features of MS that leads to debilitating outcomes for people affected by MS, and understanding progression will only be possible by following people over time.

Ultimately, this project could impact how we treat MS, how we diagnose MS, how people live with MS, and change how we talk about MS progression altogether – this is a significant pursuit of knowledge, one that could dramatically change the landscape about what we know about MS.

To find answers to any questions you might have about the trial, take a look at our Canadian MS Progression Cohort study FAQ.

Do you have any thoughts on the Canadian MS Progression Cohort study? Share them with us and leave a comment below.

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Depression and Disability: Playing a role in opinions about Physician Assisted Death? https://drkarenlee.ca/depression-and-disability-playing-a-role-in-opinions-about-physician-assisted-death/ https://drkarenlee.ca/depression-and-disability-playing-a-role-in-opinions-about-physician-assisted-death/#respond Tue, 21 Mar 2017 20:23:51 +0000 https://drkarenlee.ca/?p=1564 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.

Who was surveyed and what did they have to say?

Adapted from Marrie et al., 2017.

Adapted from Marrie et al., 2017.

More than 7,500 people responded to a survey about physician-assisted death, which Dr. Marrie and colleagues administered through an active global MS registry called the North American Research Committee on Multiple Sclerosis (NARCOMS). The survey found 7% of responders would consider PAD in all of the following hypothetical situations: (1) experiencing unbearable pain; (2) causing a financial burden to caregivers; (3) feeling extreme emotional distress; (4) inability to do things that make you happy; and (5) inability to enjoy anything that makes your life worth living. It also found that 20% of responders would not consider PAD in any of the situations.

The situation in which most of the responders would consider PAD is if they were to experience unbearable pain (65%), and nearly 50% of the surveyed individuals would probably or definitely consider it if they were unable to enjoy anything in life that would make life worth living.  Other things discussed in the survey which contributed to consideration of PAD include financial burden to caregivers, inability to be happy and feelings of extreme emotional distress.  In each of the situations except for unbearable pain, over one-third of responders indicated that they would probably or definitely consider PAD.

One thing to keep in mind is that certain groups of people living MS may not be captured in this snapshot.  In fact, there was a difference of age and race between the people that answered compared to people that did not answer the survey.

There were certain factors which influenced the responders’ thoughts around PAD- disability and depression being two of them.  Interestingly, depression was also found to be linked with thoughts of PAD in people living with AIDS, which research shows can be reduced if the depression is effectively treated. Recently, MS Society-funded researcher and neuropsychiatrist Dr. Anthony Feinstein from Sunnybrook Research Institute published an article in Multiple Sclerosis Journal on the link between leisure activities and depression.  He found that depression in people living with MS leads to reduced participation in leisure activities such as reading and writing. The high prevalence of depression in people with MS and its impact on quality of life is an important piece that needs to be further studied, especially in light of the findings from Dr. Marrie’s PAD survey. Additionally, the importance of social support for people with MS is highlighted in the survey, as higher levels of social support and engagement in religious activities such as attending church, were associated with a lower likelihood of considering PAD.

In 2015 the Supreme Court of Canada ruled that a competent adult with a “grievous and irremediable medical condition” has the right to end their life. However, we would be remiss if we did not state that MS is a complex disease and it is important to figure out the factors that influence health and long term care decisions. This survey stresses the importance of providing adequate support for people living with MS, in addition to addressing the high rate of depression and developing ways to adequately diagnose and treat depression early on in people with MS.

The MS Society provides many services that can help people get cope and live with the disease.  If you want to find out more about MS and how to cope with it or if you have any question regarding the disease- connect with an MS navigator by calling 1-844-859-6789 or emailing them at msnavigators@mssociety.ca.

Source:  Marrie RA et al. (2017) High hypothetical interest in physician-assisted death in multiple sclerosis. Neurology. [Epub ahead of print]

 

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