Tuesday, October 22, 2013

NMO Day 2013, Vancouver

Top: NMO Day Venue, the beautiful VIFF Vancity Theatre

Bottom: (L-R) Nancy Reimer, NMO Advocate, NMO Walk/Run Organizer
Dr. Katja Van Herle, Guthy-Jackson Foundation
Dr. Tony Traboulsee, Neurologist, Researcher, NMO Specialist UBC
Lelainia Lloyd, Advocate, Health Mentor

Last Thursday was NMO Patient Information Day here in Vancouver. As I've mentioned before, I was presenting about the Health Mentors Program. It went very well. There was alot of positive feedback and I was able to hand out pamphlets to people who were interested in applying to be Health Mentors next year. I actually ran out of pamphlets!

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. 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. I would love 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! That's my hand on top and the rest belong to members of my support group. I shot this about a year and a half ago. So far it's been used on the cover of the Peer Support information pamphlet and now as part of their slide show header! 

Yesterday I had to head out to UBC for a neuro appointment. When I arrived, one of the researchers was at the front desk and immediately greeted me and told me what a great job I did on my presentation. When the neuro fellow came to get me from the waiting room, she told me she'd heard great things about my presentation. I wasn't expecting this, but it made me feel really good to know I'd had an impact. The feedback has been very positive. I really love doing advocacy and awareness work.

This is Annie, one of the NMO researchers at UBC. Without her hard work, NMO Day would not be possible. She is a dynamo at pulling everything together and such a kind and lovely person. We adore her!

So...that's the scoop from the 2nd annual NMO Patient Day here in Vancouver. I'm so grateful to live in a city where connecting to others living with this rare disease is possible. Together we are stronger!

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