Of Note

1. One year ago today, we sat in our family doctor's office and heard news that no one every wants to get: my husband had kidney cancer. This past year has been incredibly rough on so many levels and we're not out of the woods yet. In less than 2 months, we'll celebrate our 23rd wedding anniversary and I am just so grateful that this man that I love so much is alive and fighting for his health. 

2. My blog turned NINE (!) at the beginning of the month and I'm just getting around to mentioning it now. Yes, I started blogging in the dark ages of the internet. This post is number 1548. Go me! I am humbled that people are still interested in reading about my art, my life and the random stuff that rattles around in my head. I will have to plan something great for next year when my blog turns 10!

3. I sent Peter Grande and the good people of MV-1 Canada some event photos and a thank you card for being such generous corporate sponsors for the inaugural NMO walk/run. This week they sent me a thank you card for my thank you card. This is the epitome of what it means to be Canadian. Funnily enough, I've had this happen before-Canadian sportscaster Brian Williams has twice sent me thank you cards for my thank you cards. Its charming and sweet and it makes my heart smile when this happens. I've hung MV-1 Canada's card on my inspiration board where I will see their kind words every day.

4. My friend Deryn Mentock, who is a stunningly talented artisan has published her first book, The Jewelry Maker's Design Book: An Alchemy of Objects. I am so incredibly proud of her. Years ago, when we were starting out in the mixed media art world, we formed an artists' circle made up of good friends who  supported one another as we built our art careers. It's so fantastic to see her having success and to know how hard she's worked and how far she's come. I couldn't be happier for her. Congratulations Deryn!

FCM Vancouver

So if you wondered where I'd disappeared to, I've been at the Federation of Canadian Municipalities (FCM) Conference volunteering for the last four days. It's an annual conference where leaders from municipalities from across Canada gather to network and learn from one another. I was serving as an Operations Assistant, which meant I was helping facilitate the organization, loading and dispatch of a fleet of buses that were used for study and companion tours. There were 2600 delegates at the conference so this was a big and challenging job, but something I love doing. I've done VIP transportation dispatch for several of the big city events in the past (World Police & Fire Games, 99th Grey Cup Festival and CONCACAF Women's Olympic Soccer Qualifier) so my skills were put to good use. I got to work with a great team, so that made the job fun. I was really lucky!

The City of Vancouver gave use these pretty blue vests as our uniform. It was just like being a Blue Jacket all over again, because the conference was held at Canada Place, a place where there are alot of tourists so people would see us and ask for all sorts of information and assistance whether they were part of the conference or not. The legacy of the beloved Blue Jackets lives on!

One of the great things about this job was that I got to meet and greet delegates from communities across Canada. There were delegates from Tanzania, Jamaica, the Ukraine and Belize as well. Many of the delegates brought pins to give out, from their cities. One delegate from Quebec handed me a pin as I was assisting him onto a bus and after that, people saw it on my ID lanyard and kept giving them to me. By the end of the conference, it was loaded! That was really lovely and unexpected. One of the delegates I spoke to from Manitoba actually knew some of my family! We both agreed that Winnipeg really is like a small town full of extended family. I gave her my card (and a hug!) so she could give it to my second cousin when she sees her. 

I also had (by chance!) the opportunity to assist Green Party Member of Parliament, Elizabeth May when she arrived to give a speech at the conference on Sunday morning. I escorted her to the conference center and we had a really nice chat on our walk up. It's always interesting to get to know someone you see in the media even just a little when they are just being themselves. She is a lovely and I have to say I admire her dedication and perseverance. She is the first and only Green Party candidate to serve in the Federal legislature, so she truly is a trailblazer and a hardworking one at that.

Rick Hansen and Federal Liberal Party Leader Justin Trudeau were also at the conference, but I didn't see them, unfortunately. I was pretty busy dealing with transportation. I would have loved to hear what Rick Hansen had to say. I am hoping his speech was recorded and will be available online at some point.

I also bumped in the Mayor of Coquitlam, Richard Stewart. It was really nice to see a familiar face in the crowd and to know he was there working diligently on behalf of our community. I was completely dumbfounded at the intensity of the work that gets done at this conference. The schedule is exhausting, but it's extremely important. Our elected officials are working hard to strengthen our communities-I saw this first hand.

My teammate Michelle invited me to have lunch with her on Sunday, so we went to the Cactus Club at Jack Poole Plaza. The one side of the restaurant has these giant angles glass windows that electronically slide open on good weather days. We sat next to them and had this amazing view of Burrard Inlet. That's the Harbour Air dock in the foreground, looking towards Stanley Park and then beyond that to the North Shore Mountains. It's a million dollar view!

This is looking to Coal Harbour and the sea wall to the left. It was such a special treat to be able to relax and enjoy lunch with a new friend in between scheduled bus times. It's these kinds of moments that remind me how lucky I am to live somewhere that is so amazingly beautiful. I never take it for granted. It truly IS paradise.

One thing that really impressed me was that I had the chance to cross paths with one of the organizers, Mar Warrender who took the time to ask me how my volunteer experience was. It says alot about the organization that she cared enough to ask. I told her it was comparable to the other big city events I've been involved in. I've actually worked with volunteer coordinators, Mike and Carrie at another event, Vancouver 125 and they are fantastic. We were treated like gold and I really enjoyed the experience. 

I especially appreciated being thanked for my service by Vancouver Mayor, Gregor Robertson, Coquitlam Mayor, Richard Stewart and by the countless delegates and their companions (husbands, wives, partners, etc.). It's always happy-making to know what you are doing is making a difference.

***

Not sure what's up next-I haven't had time to check my calendar. I do know that Peter Grande, president of MV-1 Canada is in town on business and I am hoping to be able to catch up with him while he's here to thank him in person for supporting the NMO 5km walk/run last weekend. 

I am hoping to get out with my camera for a shoot soon-I'm having withdrawals. Time to make some art!!

Making History

So today was the NMO 5 km walk/run. It was the first dedicated NMO event ever held and when I say that, I mean worldwide! We were making history in British Columbia this morning! These were our great t-shirts and I can tell you that it was a sea of green in the park today!

The event raised $20,000 the last I heard, but there were some late registrations and a number of on site sales-t-shirts, awareness bling and lunches as well as donations, so the final tally has yet to come in.

I was volunteering at the registration/check-in table, so I got to greet everyone who was picking up their race packages. Lots of smiling face, despite the early start. You can see one of our generous corporate sponsors, MV-1 Canada's info which I personally put it into the hands of our participants. So happy to help promote such a great company that has been so kind to me & the NMO community!

Very happy to have Annie Kuan (left) and Dr. Tony Traboulsee (right) joining us. Annie is the one who helps keep the NMO community connected. She is the 

Research Coordinator for the NMO Clinic & Research Program. Dr. T is a neurologist and NMO specialist at UBC. Both super nice people who are working hard to make a difference in the lives of NMO patients.

I was also so pleased to have Fin Donnelly, our MP and Selina Robinson, member of our city council join us as well. It was so great they could take time out of their busy schedules to come join us and show their support.

Here's the sea of green, as seen from the stage. It was a beautiful sight.

We had an opening ceremony. Nancy Reimer, whose 9 year old son Riley has NMO organised the event, so she spoke first about their journey from Riley's diagnosis at 7 years old to today's event. After that, I spoke very briefly about my experience and then about the importance of awareness, advocacy and the work NMO researchers and scientist are doing. Follow that, another NMO patient, Valerie Shalay (hope I got her name right!) spoke about coming to terms with her diagnosis and then Dr. T spoke about his work with NMO patients and the need for the government to cover NMO drugs.

Riley and another little girl (sorry, I don't remember her name!) the two youngest NMO patients cut the ribbon at the start line...

...and then the runners and walkers were off!

While everyone was off on the course, volunteers organized the door prizes. Our sponsors were very generous and there were lots of great goodies to be had!

There was a cheering section at the finish line to encourage everyone to finish strong and there was lots of cake and fruit for everyone afterwards.

It was a really wonderful event. Everything ran smoothly, everyone had a great time and I got to meet some really interesting people. Nancy did a fantastic job organizing this event and I think she can be really, really proud of the work she's done.

As I was leaving, I came across this:

I am not entirely sure if this was for real, but it made me laugh. I am wondering if Dr. T is aware that for $2500 he's expected to sell hot dogs out of the back of a vintage car, while wearing a speedo?!? Well I guess that's one way to fund a cure!

The Canadian Car Company With Heart

I don't normally promote companies on my blog, unless they have an exceptional art product I use and love, however, I am more than happy to make an exception when it comes to MV-1 Canada.

In April, MV-1 Canada came out with an e-book called Life Without Compromise in which stories of ordinary Canadians living extraordinary lives were featured. I am honoured to be a part of that book. (If you missed it, you can download it for free here. There's also a permanent link on my sidebar.) 

I also wanted to share that I have an article on accessibility on their blog All Access Pass. I'm talking about how accessibility improves quality of life not just for people with disabilities, but for everyone.

If you follow my blog regularly, you would also know that on May 26th, the first ever Canadian NMO 5 km walk/run is happening in my community. What I am so happy to share with you is that the good people on MV-1 Canada have generously stepped up as one of our corporate sponsors! A big THANK YOU to company co-founder Peter Grande, to Lori McKnight, and everyone at MV-1 Canada for their incredible kindness to me and support for those living with NMO. They are truly a car company with heart.

I'd like to invite you to get to know MV-1 & show them some love by following them on Facebook and on Twitter . 

If you'd like to make a donation to the NMO 5 km walk/run, you can do so here. If you'd liked to join us as a sponsor either personally or as a business, there's still time and we would really appreciate the support! Please post a comment and I will get in touch with you!

Catching Up

Always on My Mind

I am very lucky: my son gave me an iPhone as an early Mother's Day gift. I wasn't in the market for one, really, but my old phone, a 6 year old LG Chocolate Spin (which I loved and was the top of the line in touch phones when I bought it) had pretty much given up the ghost. It was no longer holding a charge and my son knew this, so he decided it was time I got an upgrade. I love it though it's going to take some getting used to the phone part-I liken it to talking on a calculator. It's just a bit odd.

I am having fun figuring out how to use the camera along with various photography apps and at long last, I've joined the rest of the world on Instagram. I've been trying to make a link button for the sidebar of my blog, but the hotlink for it refuses to work so I've put that on hold for a bit while I mull over why it's not linking properly. Eventually I'll figure it out. In the meantime, I'm under Tatterededge if you want to link up there. I've got a grand total of two photos posted so far, but there will be more soon!

In other news, I am super excited to share that I will be one of the featured subscribers in the next issue of Uppercase. (#18!) If you're not familiar, there are usually 3 subscribers featured in each issue with a little interview of about half a dozen questions. Editor Janine Vongool put a call out and I thought "Why not?" So there you have it! 

I am also happy to report that the first ever Canadian NMO 5 km walk/run is up to 250 registered participants! This is really wonderful and I am so pleased for Nancy Reimer, who is organizing the event. It's so wonderful to know so many people care and are willing to show up and support those of us living with NMO. 

I am also thrilled  to share that MV-1 Canada has kindly and generously stepped up as a corporate sponsor. THANK YOU MV-1!!! They are a lovely bunch of people, committed to making a difference in the lives of people who live with disabilities and we really appreciate their support. In case you missed it, they've put together an inspiring e-book, Life Without Compromise which you can download for free here. I am very proud to be a part of it. MV-1 Canada can be found on both Twitter and Facebook, so please show them some love.

There is still time to register for the walk/run. More info about the event can be found here and you can sign up here. If you are unable to attend and would like to make a pledge, you can do so here. Pledges in any dollar amount are greatly appreciated! On the day of the walk, I will be volunteering and speaking briefly during the welcoming. Please come by and say hello!

Other than that, I am busy writing articles and volunteering. I'm volunteering for the first time politically. Someone I know quite well is running in our provincial election and I thought it would be an interesting experience.

I am also busy prepping for the Interprofessional Health Mentors Symposium out at UBC on Monday. My students and I are going to be presenting what we've learned as a group so far. I am looking forward to seeing what the other groups have been up to as well. Members of the public are invited to attend so if you'd like to see what we've been up to, here are the details: 

Date: Monday, April 29th, 2013

Time: 6:30-7:30 pm 

Location: In the West Atrium, 

Life Science Centre, 

2350 Health Sciences Mall,

 UBC Campus 

The 2012-2013 pilot project includes 51 health mentors and 200 students from nine different health professional programs (audiology, dentistry, dietetics, medicine, nursing, occupation therapy, pharmacy, physical therapy and speech-language pathology). At the symposium, the groups summerize and share their learning with other UBC students, faculty and community. The event includes poster board displays by each of the 51 groups and the opportunity for guests to talk with students and mentors about their experiences in the program. Guests can also learn more about this new initiative and how they might get involved.

Life Without Compromise E-book

This morning I had a lovely surprise waiting for me online when I woke up. MV1 Canada let me know that I have been included in their Life Without Compromise e-book!  You can view & download it here. Please feel free to share this e-book with whomever you like! I am very proud to have been included in this great project and to have the opportunity to share my story. 

 I would like to encourage you to take some time to read this publication, as there are some really amazing and inspiring stories of ordinary Canadians living extraordinary lives. I promise you that you will come away feeling uplifted by the resiliency of the human spirit. 

Thank you to MV1 Canada for taking the initiative to create a way to so beautifully illustrate that people can live and more importantly THRIVE with disability. Here's to always living a Life Without Compromise!!