Posts Tagged ‘advocacy’

Operation Med School 2016

Written by on May 31st, 2016 –

oms

On April 30th, I attended the Operation Med School (OMS) Conference at UBC as an Ambassador for the MS Society. The conference is a day-long event held annually for grade 12 students and undergrads who have expressed an interest in attending medical school. It gives them the opportunity to hear from and meet medical professionals to learn more. Each year, OMS chooses a charity to donate part of proceeds from the conference to. This year, they chose the Canadian MS Society.

Photo credit: Taryn Lencoe

Presenting about MS & NMO. Photo credit: Taryn Lencoe

I spent 3 days preparing a power point presentation on MS and NMO and the work the Canadian MS Society does. My friend Taryn, who works for the BC-Yukon Division, joined me at the conference for support. I spent the afternoon giving my half hour presentation four times-there were 200 students in attendance, so they were broken up into groups of 50.

I decided that it would be interesting for the students to get some hands-on experience about what it’s like to struggle with some of the symptoms of MS and NMO, so I bought along some props to help me illustrate my point. I had one volunteer from the audience come up and put a high heel shoe on their left foot and a swimming flipper on their right and then asked them to walk a straight line. The idea was to simulate what it would feel like to try and walk with a lack of balance (the high heel) and foot drop (the flipper). All of the students who volunteered were trying to hold onto the table for support and agreed that there’s no way they would be able to walk around campus for a whole day like that.

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Trip to Toronto!

Written by on February 2nd, 2016 –
Me in front of the Toronto sign from the 2016 PanAm & ParaPanAm Games.

Me in front of the Toronto sign from the 2016 PanAm & ParaPanAm Games.

On January 18th, I flew off to Toronto to serve my 2nd term as a Community Representative for the Canadian MS Society. This year, I was assigned to the Clinical and Population Health (CPH) Committee, which deals with research related to mental health/quality of life research in relation to MS patients. It was really encouraging to know that researchers and clinicians are invested in finding ways of treating the whole patient and helping to address the unique mental and emotional challenges MS patients face living with this life-altering disease. (more…)

Catching Up!

Written by on April 28th, 2015 –

Page 17, MS Pathways March/April 2015

March was an insanely busy month. Just before I left for LA for NMO Patient Day, my husband and I faced an unexpected move. For added fun, I also had an accident that resulted in a fractured rib. It was not ideal to have to be purging and packing up an entire house in order to downsize and move, but somehow I did it. I am eternally grateful to my son and my husband’s co-workers (big burley construction guys) who came and did all the heavy lifting. We are now settled in at our new home, a condo on a beautiful greenbelt and it even has a pool. We LOVE our new home.

Patient Day in LA was a wonderful experience. There were NMO patients there from all over the world as well as NMO researchers and clinicians. I was invited to share some of the ways in which I advocate for NMO awareness through the UBC Interprofessional Health Mentors Program, as a Community Representative for the MS Society of Canada and as a blogger from Someone Like Me. While I wasn’t at my best, (my fractured rib was causing me a considerable amount of pain) it was really nice to have people come up to me afterwards and offer such positive feedback about the work I am doing. I really appreciated the support. I always feel so blessed to be able to serve and do the work I am most passionate about.

It’s amazing to think that the Guthy-Jackson Charitable Foundation was only founded six and a half years ago. At that time, there were NO clinical trials for NMO. There are now THREE being set in motion which is absolutely incredible! At Patient Day, we had the opportunity to hear from representatives from each of the three drug companies that are running the clinical trials. They did a great job explaining in layman’s terms how each of their trials worked. It was good to hear the facts and to be able to ask questions. Because NMO is so rare, NMO patients are being encouraged to participate in the clinical trials if we meet the eligibility criteria. This is our opportunity to actively help find the cure for NMO.  More information about these studies can be found here at NMOtion: http://nmotion.guthyjacksonfoundation.org/

Awhile back I wrote a short article about blogging about MS and NMO for MS Pathways, which is a UK MS organization publication. It was recently published and was a great opportunity to raise awareness for NMO, Someonelikeme.ca and NMODiaries.com . I’ve included a screen shot (above) of the e-publication. (I’m the one circled in red.) If you are interested in a hard copy, they can be ordered here: www.ms-uk.org

I have lots going on this month, which I’ll talk about in my next post. Blogging at the speed of life!