Something that I have always tried to do since I was diagnosed with Multiple Sclerosis is giving back. I find myself in a fortunate enough situation that while I have been affected by my MS, the lasting effects have been thankfully quite mild. I can, as an example, hold down a job, I am fully functional throughout my limbs, and while I do forget a few things that my wife asks me to pick up at the store, I have a fairly decent memory. I also understand that I am more of the exception and not the rule. While MS comes in many different shapes and forms, Mine has allowed me to continue with my life so far. I also recognize that for most of us who have been diagnosed, that is not the case. With some people diagnosed with the more severe strains of MS, the physical and mental effects can be quite detrimental.
It’s because of others who are struggling that I decided early on in my journey that I would do everything I could to give back. I have served as a representative to the Ontario Provincial Parliament, I have served on the MS Society’s foundation boards for three years in a row, but what I am most proud of is the fact that I have raised money for MS research. While I certainly have participated in a couple of the MS walks and a few golf tournaments, it was in 2014 that I was given the opportunity to be apart of a fundraiser that would raise money for the MS Society of Canada.
How the event Started
It started a few years before. I was freshly diagnosed and quite freaked out about it. My sister informed me that one of her college buddies had also been diagnosed at a relatively young age, and he would be willing to meet me for a drink and talk about his experiences. With MS being a disease that affects more women than men, and typically men get diagnosed at a much older age, getting the chance to speak to a man who went through a similar experience as I did was an invaluable opportunity. The guys’ name was Shane, and he and I met one night at a bar, talked about MS and how it affected him, how it affected me, and where I should go next. I was lucky that he gave me some great advice, and he was able to give me hope that not everything would end now that I had been diagnosed. After that initial meeting, we exchanged a few e-mails, but for the most part, we went about our separate ways. He was living in Toronto, and I was living in Ottawa, so there wasn’t a lot of interaction simply because of the physical distance between us. Cut to 2014, and I was in the process of moving from Ottawa to Toronto to start a new job. I would travel back and forth between Ottawa and Toronto on weekends to see my family who hadn’t moved as my daughter was still in school at the time. On one such train trip to Ottawa I got an e-mail from Shane;
“Hey J,
I thought that I would put together a fundraiser to raise money for the MS Society of Canada. I know that you’re always looking for ways to get involved, and I know you’re living in Ottawa, but if you would like to be able to help in any way, I would really appreciate it.
Let me know,
Shane”
I’ll be honest. I wasn’t sure if I wanted to be apart of it. Up until that point, I had hidden my MS from my working life. In my head, I was an information manager, and a good part of my job was being able to know how our information system worked and being able to recall information on the spot. If people knew I had a neurological disease that could cause cognitive issues, they might not trust me anymore. I was starting a new job, and I didn’t want to have my career hampered by something that was beyond my control. I forwarded the e-mail from Shane to my wife and expressed my concerns. I trusted Sam and knew that she would be able to provide me with an answer as to whether or not I should open myself up at work about my MS. Her answer which came nearly instantly was eloquent as ever; “Don’t be an idiot. E-mail Shane back right now and tell him you’re in.” Well, that and the follow-up text from her asking me if I’d e-mailed him back yet pretty much sealed the deal for me. I e-mailed him back and told him not only was I in, but I was also now living in Toronto so that I could be entirely in. We (along with the incredible work of Shane’s Sister Kim) That we were able to hold the first Night to Fight MS in the summer of 2014.
How it works
The event has followed (more or less) the same formula since it’s inception. It’s a cocktail party with live music, a silent auction and a featured researcher. We would feature a study that was being done in the field of MS Research. We would get the researcher to come and talk about the work that is being done. It’s a great time with good food, great drinks, and good times all around. Shane, Kim and I have always been thrilled at the number of people who show up to our event, and we feel blessed that it has grown every year. It’s a thrill for us to do it, and I am always blown away with how generous people are.
I had taken part in a few different MS-related fundraising events, but one of the things that always bothered me was the feeling that I hadn’t done anything. Don’t get me wrong, I had raised significant money for the Canadian MS Society, and I’m confident that it made a difference, it just didn’t feel like I was doing enough. Night to Fight MS has made it so that we have been able to bring researchers to the kinds of people who can fund their research. It’s also given me a fantastic outlet to pour all of my volunteer time into. Night to Fight MS is a great event that I am proud to be apart of every year that we do it.
All three of us, Shane, Kim, and myself, are all motivated by the same thing; we all want to make a difference in the fight against MS. It’s important to us, and that’s why we have continued to do this event every year. Typically we would have had the event by now, but unfortunately, because of COVID-19, we have been forced to postpone until October. We are not deterred. We will have our event this year, and I’m hoping that it will be the best one yet!
If you would like to donate to our event, or if you find yourself in the Toronto area and would like to attend, you can make a donation or purchase a ticket on the Night to Fight MS Site. Oh, and as for my concerns about letting my co-workers know that I have MS (as many of them have been kind enough to attend over the years), I am thrilled to report that it has not made any difference in their trust in me.
If you would like to check out my previous MS posts you can do so here;
An Information Manager with MS
An Information Manager with MS Part 2
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