Archive for November, 2013

Modern day hero

Written by on November 26th, 2013 – No Comments

By: Katia (blogger for Commemoi.ca – the French version of Someonelikeme.ca)

What is a hero, if not someone who inspires us? Someone who continues to move forward, despite the pain and fatigue? Someone who continues to fight?

On October 18th and 19th, I was lucky enough to be offered a unique volunteering opportunity in Montreal. I represented F.U.MS, the foundation started by Billy Talent’s drummer, Aaron Solowoniuk, who himself lives with MS. Accompanied by my sister, my mandate was to sell F.U.MS t-shirts as well as distribute buttons for the MS Society’s www.someonelikeme.ca website. As fans of the band, we last saw them in Quebec City three years ago and were really excited for these Montreal concerts; we were going to have the chance to attend their concert, not once but twice, at the Metropolis!

In the end, our promotion of F.U.MS and www.someonelikeme.ca at the concerts created a lot of awareness. Young fans, when learning about Aaron’s condition, felt concerned. Back when I learned about it, I remember having a similar reaction: how can he have MS and drum in a band?? How did he make this work with the amount of energy that shows and tours must demand? I was immediately very impressed, but mostly inspired.

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NMO Day 2013, Vancouver

Written by on November 19th, 2013 – No Comments

Thursday, October 17th, 2013 was NMO Patient Information Day here in Vancouver. I was invited to gave a presentation on the Health Mentors Program which went very well. There was alot of positive feedback.

My friend Nancy Reimer talked about being an advocate and organizing the first NMO 5 km walk/run (the first anywhere in the world!) this past May. She did a great job. When she talked about her 9 year old son’s battle with NMO, it brought me to tears. Little kids should not have to deal with life threatening illness!

Dr. Katja Van Hurle, from the Guthy-Jackson Foundation spoke about the work the foundation is doing. It’s easy to see from her energy and enthusiasm that she is such an asset to the foundation. Listening to what she had to say, it was impossible not to feel hopeful and encouraged about the progress the foundation is making. I hope to be able to attend GJF’s NMO Day in San Diego next year to connect with the larger NMO community in person.

The MS Society Lower Mainland Chapter also did a presentation on the support services they offer. Since the Guthy-Jackson Foundation is based in the US, the Canadian MS Society has kindly offered to take NMO patients under their wing and offer all their services to us as well. 

I got a nice surprise when they were showing their slides. There, up at the top left of each one was one of my photographs! This particular photograph has been used on the cover of the Peer Support information pamphlet and now as part of their slide show header! 

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Student Leadership and Multiple Sclerosis

Written by on November 12th, 2013 – 4 Comments

A big part of who I am is the fact that I am a university student. Especially since I live on residence, work three different positions on campus and I’m a full-time student, my university career is my entire life. I even want to work in higher education when I’m older.

However, at the beginning of my journey of living with MS, I didn’t know if that was in the cards for me. I knew I had to avoid stress, but I live off being busy. I call myself a professional busy bee. So how was I supposed to avoid stress, while maintaining the lifestyle I loved and thrived off of?

My philosophy on student leadership needed to be change. Now it is one that has been touted by many: You’re a person first, a student second, and a leader after. I can only be a student leader, and involved in so many things if I’m a student, and I’m putting my academics first. So that needs to be the focus after I’m making sure to take care of myself.

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F.U.MS in Vancouver

Written by on November 1st, 2013 – No Comments

Billy Talent was here in Vancouver the last two nights, playing concerts at the Commodore. Loribelle and I were invited to come and help Aaron out by manning his F.U.MS booth. We had a great time meeting Aaron’s fans, sharing information about someonelikeme.ca and letting them know about Aaron’s new “Ask Aaron” section in the forum, as well as selling t-shirts to help raise funds for the Canadian MS Society. We did a lot of tweeting and even gave away a signed copy of their latest album to one lucky couple who saw the tweet to be the first to visit the F.U.MS booth to win it.

Last night Aaron came to meet Loribelle, her husband and I before the doors opened. It was nice to finally put a face to a name, after all this time. We had the chance to chat and I gave Aaron an NMO awareness bracelet, which he immediately put on. He very kindly asked us which of the band’s t-shirts we would like to have and then took them and had them signed by the entire band.

Loribelle and I had also never met before, so doing this volunteer gig was the first time we’ve crossed paths. It was great hanging out and getting to know her and I am sure we’ll get together the next time she’s in town.

THANK YOU Aaron for the opportunity to help out. Have a great time on the European leg of your tour!