Meaningful. Enlightening. Change.
Feeling empowered, proud and hopeful, more than 40 members of the multiple sclerosis community embarked on Parliament Hill in our nation’s capital in solidarity to raise awareness of the disease and #LifeWithMS for this year’s Day on the Hill.
What they took away with them was even more.
“It was incredible to be in Ottawa,” says Juan Garrido, diagnosed with MS in 2012 and manager, brand marketing and communications, MS Society of Canada. “Just being in the halls and offices of those buildings, there is an energy of discussion, debate, and change in them. Being able to meet first hand with members of parliament about not only my experience with MS, but also the experiences of the thousands of Canadians touched by the disease, reminds me of the power that stories have during moments of change.”
From April 29 to May 1, 2019, representatives of the MS community met with MPs, senators and policy staff in more than 80 meetings. While there they discussed the need to improve secure income and employment and increase access for people living with MS as well as the need to invest in health research.
“Income security is so important,” raises Chelsey Rogerson, whose partner was diagnosed with MS in 2013. “I know first-hand how stress can negatively affect those living with MS and exasperate their symptoms. Everyone deserves to be able to live in a safe and secure environment. We know that a high percentage of those living with MS will not be able to work for as long or as often as their healthier counterparts, so it’s imperative they have the support they need so they can spend more time focusing on feeling healthy and less time worrying about how they’re going to pay their bills.”
“For me, employment security resonates the most,” says Juan. “I’ve always been an ambitious person and I’m at the early stages of my career. I have a lot of plans, dreams, and hopes, and I want to be sure that I can continue on my path. As do many people with MS – they want to work, go to school, volunteer, and be part of their communities. The unpredictability of MS means I don’t know what tomorrow will bring for me in terms of energy levels, or ability. But instead of avoiding making big plans or moves in my career out of fear of the unknown, I want to work towards a world where people with MS have all the options still laid out for them, with support and assistance available to them when needed.”
As Juan mentions, MS is an unpredictable disease. When you or a loved one is diagnosed with MS, life can suddenly turn on a dime: one day your body behaves normally, and the next it refuses to listen to you. MS can happen to anyone, without warning, and often in the prime of life. Over 77,000 Canadians live with MS; that’s one of the highest rates in the world.The fact that MS touches so many Canadians reinforces the importance of the advocacy work lead by the MS Society of Canada.
“Awareness is the first step and that’s what advocacy is all about,” says Chelsey. “First, people have to know about the issue, then, the more they understand, the more they care about the issue and once they care about the issue, they will be a great ally in our fight to end MS. Advocacy is so important – it is how we drive change.”
For Melissa Kuhn, diagnosed in 2017, her time in Ottawa, talking about her own experiences in hopes of making a difference, was something she felt passionately about taking on.
“Since being diagnosed, I decided to look at it as creating opportunities for myself,” she says. “There is no shame in standing up for yourself, your life and your future. I want to make sure that we can live a life without MS. No more fatigue, no more medications and no more worries about the ‘what if’s’.”
Day on the Hill provides an opportunity for members of the MS community from across Canada to share their personal and profound stories of life with MS. Those stories of the obstacles to remaining in a job; the sacrifices supporting spouses or adult children; the frustrating barriers to access; the struggle to pay bills and make ends meet; and the ongoing emotional demands of a disabling and unpredictable disease.
With these stories we look to the federal government to make change. We ask them to act now to improve #LifeWithMS – to mobilize a nation to accelerate the pace of MS breakthroughs and improve policies, legislation and programs to empower people affected by MS to live their best lives.
“I left Ottawa feeling proud and hopeful,” says Chelsey. This time is a chance for members, volunteers and staff, to work together to ensure Canadians living with MS, and their families, have the opportunity to participate fully in all aspects of life by advocating for improvements in government legislation and policies, private industry practices and/or public attitudes.
These moments, collectively, for the MS community, are our acts of greatness.
“It’s anything that propels the cause forward,” says Chelsey. “Whether it’s volunteering, making a donation, sharing information on social media, talking to others about your personal journey, or even just finding the energy to get up and out of bed that day – an act of greatness is the small things those living with MS and their supporters do to help end MS.”
Juan agrees, “An act of greatness is every single thing any one does that helps make life with MS easier. For people living with MS, it’s the resilience, the little victories along the way, and the adjustments made in life to still lead full lives.”
For Melissa, it’s simple, “Being brave to lead with vulnerability is an act of greatness.”
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