Archive for April, 2015

Catching Up!

Written by on April 28th, 2015 – No Comments

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!

 

 

 

 

 

TIME TO LACE UP !!!

Written by on April 22nd, 2015 – No Comments

Capture3It’s that time of year again!!! Sunday is the big MS walk in Saskatoon and I’m very excited!!! I always love doing “CTV news clips” here in Saskatoon – wanted to share two that I’ve been a part of in the last couple of weeks to help promote the walk!!

GET WALKING EVERYONE! Thanks for all that you do!

 

 

Check out the 2 links below to watch the features on CTV News Saskatoon!

This one is from last week: http://bit.ly/1JcM7GZ

This one is from yesterday! (Start watching at 8 minutes): http://bit.ly/1DBRgQU 

I encourage each of you to get involved in any way that you can, being an MS ambassador is amazing!

By coming together at the MS Walk and through your fundraising efforts, we make a tangible and life-changing difference to the 100,000 Canadians living with MS. This is an excellent opportunity to interact with members of the community while supporting a great cause! Go to mswalk.ca to register today or to sponsor a team!

Meet Melissa: Star of MS My Story Videos!

Written by on April 9th, 2015 – No Comments

M1Hello Someone Like Me! My name is Melissa. I’m 27 years old (newly might I add!), and I was diagnosed with Relapsing Remitting Multiple Sclerosis in late 2012, when I was 24. Before my diagnosis things were different for me, which I’m sure anyone with MS could say, really. I had recently graduated from the Toronto Film School, and was trying to get my foot in the door working in world of film production here in Toronto, something I really loved to do. After being diagnosed with MS though, things took a bit of a different turn and I ended up having to leave that behind. After just about a year of being diagnosed, and trying to learn to accept that, I decided it was time to find some new activities to keep me productive, and get excited about life again! I started trying new things that I hadn’t before. Even some things that I’d wanted to do for a long time but was a bit scared of, like taking singing lessons, travelling alone and even starting a blog of my own about it. It was around that time, I also started getting more involved with the MS Society, and joined the Youth Advisory Group (YAG). It felt like it was the right time for me to try and give back to the community that I had now found myself a part of. I didn’t really know what I could do to help, but after joining YAG I started to feel like maybe there was something I could bring to the table, something I could do to try and make some small difference in the world of MS, and maybe even involve some of the things I had learned in school! (more…)