We recently got the chance to speak to Pamela Valentine who is the President and CEO of the MS Society of Canada to find out more about their organization and what our readers can do to help.
Describe your charity/non-profit in a few sentences.
Canada has one of the highest rates of multiple sclerosis in the world. On average, 12 Canadians are diagnosed every day. MS is a chronic autoimmune disease of the central nervous system (brain, spinal cord). It is considered an episodic disease meaning that the severity and duration of illness and disability can vary and are often followed by periods of wellness. Most people are diagnosed with MS between the ages of 20 and 49 and the unpredictable effects of the disease will last for the rest of their lives. The MS Society of Canada provides information, support and advocacy to people affected by MS, and funds research to find the cause and cure for the disease, bringing us closer to a world free of MS.
What problem does it aim to solve?
Our mission is to connect and empower the MS community to create positive change. The person living with MS is at the heart of everything we do. We work to ensure better supports and treatments are available to people affected by MS and that Canadians living with MS, and their families, can participate fully in all aspects of life.
When did you start/join it?
I joined the MS Society of Canada as President and CEO in 2018.
What made you want to get involved?
I am very much drawn to community led organizations. The drive and passion of the MS community and the team of volunteers and staff at the MS Society are what led me here. The momentum that has been achieved in better understanding the disease and finding more effective treatments in the last two decades has been remarkable. In joining the organization, I am hopeful that we are able to understand what contributed to the disease and are able to stop it in its tracks in the future.
What was the situation like when you started?
The MS Society has a long history as a reputable organization that has helped change the outcome for people diagnosed with MS today. Since our founding in 1948, the core support of the MS Society has been from tens of thousands of dedicated individuals, companies and foundations in communities across Canada – there is a strong grass roots connection of communities helping communities.
How has it changed since?
As with everyone around the world, COVID fundamentally changed the way we live and work. We quickly recognized the challenges the pandemic was creating for many Canadians living with MS – from issues of social and emotional isolation, loss and anxiety and caregiver burnout to barriers in accessing treatment and care. We knew that we needed to find innovative ways to deliver on our mission and connect the MS community with online programming, services, and events to help break through the isolation. I’m so proud of how our organization has pulled together and adapted to become more agile and flexible with a laser focus on our impact goals. We’re also grateful to have received timely support from the federal government, and incredible generosity from our donors, volunteers, event participants, and researchers.
The need for information, resources, advocacy, and support programs for people affected by MS is as urgent and critical as ever. It’s important that we continue to build awareness for MS and provide the support people affected by MS need, while ensuring that the groundbreaking MS research being done to secure a world free of MS continues into the future.
Perhaps one of the silver linings in response to the pandemic was the remarkable way the global MS community came together to collaborate and share data. By using outcome-based clinician-reported data from 18 countries around the world, we came together to better understand the risks of COVID in people with MS and quickly offer evidence-based guidance about DMTs and the safety and effectiveness of the vaccines. We saw just how capable this incredibly strong global network is at answering urgent questions for people living with MS here in Canada.
What more needs to be done?
More research! We’re on the cusp of incredible breakthroughs when it comes to MS research. We’ve seen such great progress in MS research over the past two decades, including advancements from just three treatments for MS to 17. Today, with better diagnostic criteria and MRI technologies we can diagnose MS earlier. Earlier diagnosis means earlier access to treatment, which has the potential to slow the damage MS causes and maximize brain health. Continuing to drive momentum from a research perspective is fundamental. We need to make sure we’re there for every Canadian affected by MS and that every Canadian has access to the supports they need.
Despite decades of research, the cause of this often-disabling disease is still not known; however, researchers are closer to finding the answer. Current evidence suggests that lifestyle, environmental, genetic and biological factors all contribute. There is currently no cure, but each day researchers are learning more about what causes MS and are zeroing in on preventing and managing this disease. The continuation of raising funds and awareness for the MS Society is crucial to support people living with MS and work toward living in a world free of MS.
The funds and donations contributed to the MS Society assist in supporting groundbreaking research in various areas, including advancing treatment and care, enhancing well-being, understanding and halting disease progression and preventing MS. Advancement in research helps all Canadians living with MS. The funds also go toward ensuring that people affected by MS receive quality access and support that they need in whichever community they live in. Some examples of this programming include virtual wellness, 1:1 peer support, and our MS Knowledge Network.
How can our readers help?
Your readers can help by participating in A&W Burgers to Beat MS Day on Thursday, August 19. By participating in Burgers to Beat MS you can help raise vital funds for Canadians affected by MS. Beyond that, readers can volunteer at fundraising events or donate any time through our website.
Do you have any events coming up?
On Thursday, August 19th MS Society of Canada and A&W Canada are teaming up with Olympic gold medalist, Christine Sinclair, for the 13th annual Burgers to Beat MS Day. On this day, A&W will donate $2 from every Teen Burger® sold across Canada to help people living with MS. Donations will help the MS Society fund research, support and services that are fundamental to changing lives – bringing us one step closer to a world free of MS. Leading up to August 19th and until August 30th, Canadians can support the campaign by rounding up their bill with any purchase, by making an online donation at BurgersToBeatMS.ca, or by adding a donation when ordering through A&W’s mobile app. The MS Society continues to hold community fundraising events throughout the year with MS Bike being the next opportunity to rally with the tens of thousands of Canadians living with MS. MS Bike allows you to go the distance and make a difference, from anywhere. For more information and to register visit msbike.ca.
PAY IT FORWARD: What is an awesome local charity that you love?
Canadian health charities across Canada need your help now. Health charities on average have been impacted by at least a 50% drop in revenue, as a result of fundraising efforts on hold due to COVID-19, the cyclical nature of fundraising and the economic downturn.
Each year, our organizations support over 2.9 million Canadians living with chronic diseases and conditions, along with thousands of caregivers. Collectively, we invest over $155 million annually into health research in Canada, funding new interventions and sustaining Canada’s scientific capacity.
Now more than ever it’s important to raise awareness that #healthcharitieshelp –
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