This year’s Federated Health Charities campaign runs from April 3, 2023, to June 30, 2023. During the campaign, we will highlight how each of our 21 charities works to improve the health and well-being of people across our province.
The twelfth charity we’re spotlighting is the Multiple Sclerosis Society of Canada.
At a time when a diagnosis of Multiple Sclerosis (MS) meant being told to “Go home and hope for the best“, Evelyn Gotlieb Opal and Harry Bell refused to accept the status quo. Inspired by the example of the American National Multiple Sclerosis Society, the two Montrealers founded the Multiple Sclerosis Society of Canada in 1948 to support research into a cure for MS.
Over 75 years, the MS Society has invested more than $200 million in MS research, putting Canada at the forefront of MS research worldwide. Research sponsored by the MS Society has been essential in developing new treatments and improving our understanding of the disease. However, there is still no cure.
The work of the MS Society is particularly important for Canada and Canadians because our country has one of the highest rates of MS in the world. There are nearly 100,000 people diagnosed with MS living in Canada today, and nearly one-in-three people in Canada living with MS live in Ontario.
No doctor can tell you exactly what’s going to happen.
MS is a chronic autoimmune disease that affects the central nervous system by damaging the myelin, the coating that protects the nerves. The damage to the myelin disrupts the ability of the nerves to conduct electrical impulses to and from the brain and may damage the nerves themselves. This can result in a wide variety of symptoms that people with MS may or may not experience, depending on what part or parts of the central nervous system are affected. This makes MS a difficult disease to manage, not just from a medical perspective but for the person living with the disease – no doctor can tell you exactly what’s going to happen.
The most common form of MS is “relapsing-remitting” MS, which means that people with MS will go through periods of “relapse” where they experience symptoms, followed by a period of “remission” where they experience a complete or near-complete recovery. A small number of people with MS, about 10%, experience a progressive form of the disease without any periods of remission. In both cases, a person’s MS symptoms will get worse over the course of their lives.
MS is sometimes described as a disease ‘of the young’ because it is typically diagnosed in people between the ages of 20 and 49 when many people are starting careers and families, and trying to build their financial security. Kaileigh Krysztoifak was just 23 when she was diagnosed with MS.
“I had just started on a career that I absolutely loved. And I was working really, really hard and was worried that this was going to change my life,” Kaileigh says. “And I mean, it did. It was kind of the obliteration of expectation.”
Today, there are treatments for MS that can reduce the frequency and severity of relapses, and/or ease the impact of MS symptoms. However, doctors still can’t accurately track when a person’s MS may get worse or what might trigger a relapse. The unpredictability of living with MS is one of the reasons why the programs and support the MS Society offers to people living with MS and their families, friends and caregivers are so vitally important.
“The MS Society really helped me find the positive and find the community that I needed to help support me,” says Kaileigh. “So, I think I would just – I just certainly wouldn’t be the person I am today without having the support of the community that the MS Society introduced me to.”
Empowering positive change for people living with MS is a vital part of the MS Society’s mission. Their support services provide people with MS, their families, friends and caregivers with a trusted source of information and support for people affected by MS. Through programs like the Quality of Life Equipment Grants and their CPP-D (Canada Pension Plan Disability benefit) Application class, the MS Society also provides practical advice and/or assistance to people living with MS who need help accessing their benefits or with the cost of mobility equipment and safety devices.
The MS Society is also actively involved in advocating for people with MS as well as supporting them to become self-advocates. The unpredictable and life-long impact of MS means that people living with the disease are especially at risk of financial insecurity and have disproportionately high rates of unemployment. People with MS may also experience financial and physical barriers to accessing newer and more effective treatments or getting the comprehensive home care they need to stay in their homes and communities. This can be particularly difficult for people living in remote and rural communities across Ontario.
The MS Society joined Federated Health Charities in 2019.
“It’s incredible what your donations are doing, absolutely,” says Kaileigh. “You’re supporting a cause and a community with your donations. But you’re also advocating for a community of people who need advocating for.”
To learn more about the MS Society, please visit MS Canada.
To make a payroll pledge or donation to support the MS Society and Federated Health Charities, please visit Federated Health Charities.
