People living with MS are taking control of their disease
Theme of “Independence” centre stage during MS Awareness Month
April 28, 2016 – Toronto, ON – Whether it’s sharing experiences online, influencing research, or lobbying government for increased support for those with chronic illness, people with multiple sclerosis are taking control of how they manage their disease in more ways than ever before. In honour of MS Awareness month (May) and in the lead-up to World MS Day (May 25), Canadians impacted by the disease are joining an international conversation about what “independence” means to them using the hashtags #TeamFight, #endMS and #strongerthanMS.
“Today, an MS diagnosis might not be something one wants to hear, but it’s not the end of the world either. People with MS all over the world are living fulfilling lives – they have professional careers, families and travel the world,” says Jonathan Allenger, MS Ambassador, MS Society chapter board member and MS Bike participant. “The fact that sometimes we need certain accommodations doesn’t mean we aren’t fully contributing members of society, with the drive and ambition to make a significant difference, in whatever pursuit we’re undertaking at any given moment.”
While “independence” means many things to the many people who live with MS, it doesn’t have to mean being alone. The MS Society of Canada is proud to stand alongside Canadians impacted by the disease as a part of #TeamFight and offer platforms in which members of the MS community can demonstrate their independence.
Members of the MS community play a crucial role in driving research programs and investments led by the MS Society. Community representatives who live with MS like Corrie, Jenny and Karen, sit on independent review committees for research grants and awards, the MS Society’s Medical Advisory Committee (MAC), which oversees scientific and medical matters that impact the organization and its stakeholders, and the Translational and Commercial Research Advisory Committee, which provides recommendations to the MAC on potential translational and commercial research investments. These dedicated individuals not only help to inform research priorities and funding allocation, but provide feedback on ways that researchers can communicate their work in an understandable way for the public.
Last August, the MS Society reached out to the MS community to better understand how people view wellness (e.g. exercise, maintaining a healthy diet, effectively coping with stress, etc.), learn about what they do to improve their own wellness, and to narrow in on the gaps in research, health practices, and policies around wellness and MS. The MS Wellness Survey – designed with the feedback of Melissa Goldstein, a person living with MS and one of the minds behind the MS My Story video project – received and overwhelming response from 1,032 people affected by MS right across Canada; and the information gathered has already made an impact.
Results from the survey were presented to participants of a 2-day competition called Hack4Health, which saw students from the University of Waterloo come together to create innovative wellness tools and solutions for people living with MS and Alzheimer’s disease. Because students came from such diverse backgrounds as engineering, project management, computer science, and graphic design, this event yielded novel, tech-savvy, real-world ideas to help people manage their disease. The MS Society awarded Team TBS with a $15,000 grant that will allow them to develop a device designed to capture the symptoms and wellness experiences of people living with MS.
Also informed by results from the survey, the MS Society and affiliated Multiple Sclerosis Scientific Research Foundation recently launched the Hermès Canada | MS Society of Canada Wellness Grant Competition – up to four $40,000 grants to be awarded – made possible by funding from Hermès Canada. The aim of these grants is to translate research findings into innovative wellness solutions that will improve health and quality of life for people affected by MS. Grantees will be required to engage people affected by MS in a collaborative way, to ensure that their perspective is represented and integrated throughout the study, and that their input plays a large part in the design, implementation, analysis and translation of the study and its outcomes – an unprecedented approach by the MS Society to date.
In a growing digital world, social media platforms are increasingly a central meeting place for the MS community to share up-to-date information, discuss issues they are facing and to share everyday experiences. With nearly 35,000 followers on Facebook, more than 12,500 followers on Twitter, and a growing Instagram following – the MS Society’s social media pages have been a catalyst in connecting people and offering a space for conversation. MS Society blogs – including the youth-led someonelikeme.ca; established with Billy Talent drummer Aaron Solowoniuk, who lives with MS – have been key spaces where people like Lizelle, Barb and Andrea, who live with MS, can tell their story in their own words.
“I turned to social media. I didn’t spend hours Googling, but instead searched MS hashtags on Twitter and Instagram,” says Kayla Chatkiewicz, MS Ambassador, MS Walk participant and founder of the online community Keep S’Myelin. “I had to do something to voice my feelings, or I would have driven myself crazy.”
The newly launched MS Peer Support Program is another way to be connected with someone who has “been there” and can relate. The program matches trained volunteers with peers in the MS community. People involved can connect in a way and at times that work best for them (e.g. by phone, email or video chat).
Hot on the heels of a successful letter writing campaign that saw the MS community send more than 10,500 letters to federal election candidates last fall to increase awareness for MS and the needs of Canadians living with the disease, the MS Society’s spring advocacy campaign focuses on two major action points crucial to enhancing independence – secure jobs and income for people impacted by MS and accelerated research to find effective therapies for progressive MS.
“I started advocating for people with MS when I turned to the MS Society back in 1998 to ask for help gaining access to my CPP benefits. They were being denied to me because I had an episodic disability,” says Andrea Butcher-Milne, MS Ambassador. “For me, what advocacy boils down to is helping to provide people with the tools they need in order to remain in control of their own lives, maintain their independence and feel confident and fulfilled despite all of the things that are changing in their lives.”
In addition to long-standing signature events hosted by the MS Society, such as the MS Walk, MS Bike and Carnation Campaign (Mother’s Day weekend in select communities), there are a number of fundraising opportunities for people wanting to give back to the cause in a way that is most meaningful, and fun, for them. I Challenge MS provides fundraisers with the tools and support they need to get their one-of-a-kind event up-and-running on their own terms.
“I was diagnosed with MS in early 2007 after a severe attack in November of 2006. Running has become part of my fight,” says Sean Wingrave, I Challenge MS team leader of the Really Long Run to End MS (May 14, 2016), which raised over $23,000 for people living with MS in 2015. “While I run, I have crazy daydreams. One of my recurring dreams was to run around North America to raise awareness of MS. Obviously that daydream wasn’t going to become a reality. Then, while on vacation in Mexico, my wife and I came up with an idea that seemed more achievable: running the day-one route of the Leduc to Camrose MS Bike tour. I don’t know if it was the heat of the tequila, but at the time it seemed like a great idea to run more than 70km (77km to be exact) in a single day to raise money for people like me who live with MS.”
A variety of spokespeople, including members of the MS community, are available for interviews. For more information about MS, the work of the MS Society and to make a donation, the public may visit mssociety.ca.
About multiple sclerosis and the MS Society of
Canada has the highest rate of multiple sclerosis in the world. MS is a chronic, often disabling disease of the central nervous system comprising the brain, spinal cord and optic nerve. It is one of the most common neurological diseases affecting young adults in Canada. Most people with MS are diagnosed between the ages of 15 and 40, and the unpredictable effects of MS last for the rest of their lives. The MS Society provides services to people with MS and their families and funds research to find the cause and cure for this disease. Please visit mssociety.ca or call 1-800-268-7582 to make a donation or for more information.
Lindsay Gulin, MS Society of Canada
1-800-268-7582 ext. 3245