Advocacy Update

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Last month, I got a surprise email that the MS Society of Canada was featuring me in their MS Research in Action newsletter. What was really great about this was that they also included a link to the advocacy video from the NMO Patient Day in Los Angeles which took place in early March this year. This publication goes out across Canada, so it was an amazing opportunity to bring awareness to NMO. If you’re interested in reading the full article, along with the rest of the publication, it’s here.

I am a Community Representative for British Columbia. What this means is that I am a part of the medical grants review committee. Last year, I reviewed 24 of 96 Personnel grants. This was the first time anyone living with NMO was at the table. I was incredibly happy to be participating as a member if the NMO community and advocating for those living with MS and allied diseases. I was extremely honoured to have been asked to serve a second term. Reviews will begin in late November and I will be flying out to Toronto for the review meeting mid-January. I am excited to dive into the work. If you’d like to know more about this process, you can find it, along with my profile here. Click on where it says “Full interview” underneath my profile.

In the meantime, I have been doing some consulting on various medical projects as well. It’s been really great to be invited to give my feedback and to have a small hand in shaping the outcome. In finding ways to use my strengths and skills to support the work the Canadian MS Society and the Guthy-Jackson Charitable Foundation are doing, I am fighting back against these terrible diseases. We all have a part to play, whether it be by raising important research dollars, raising awareness, advocating for better treatments or participating in clinical trials. The truth is, as patients, we are powerful beyond measure and the best way to know what’s going on is to be a part of it.

That said, I want to thank everyone who took a moment to share their thoughts about the new NMO Patient Card that I posted about last month. I hope that it will be helpful for those who will use it here in British Columbia. Perhaps over time, other NMO centres can adopt the idea and adapt it to reflect their clinic’s contact information. My fingers are crossed!  If you believe it’s something your clinic should have, I strongly encourage you to have that conversation with your local researchers and clinicians. That’s how this whole thing came to be in the first place-it began as an idea, which was then shared in conversation. Our care teams can’t help us if they don’t know what our needs are. It’s up to us to communicate with them.

03
Aug 2015
POSTED BY Lelainia Lloyd
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