SEATTLE – As a non-runner, my main job on charity race days is usually one of logistics. This is a polite way of saying I lug supplies and pick up trash.
This year, I would also set up the Cure JM tent in the finishing area of the Seattle Rock ‘n’ Roll marathon. Hang banners, blow up balloons, lay out snacks and ready literature to hand to passersby. After, of course, I schlepped said stuff to said tent.
The tent serves as our foundation’s headquarters for the day. Our volunteers gather here before heading off to their duties, be it handing out water or food to runners on the course or writing down racers’ bib numbers and times when they finally crossed the finished.
The tent would be where those runners braving the miles of Seattle hills on behalf of a child with juvenile myositis would meet up with that child, family and friends after their journey.
It would be where our JM children could hang out in the shade, play and just be kids while we adults did what we could to draw attention to their cause.
If only we knew where this tent was.
The race organizers had chosen cancer to be the “exclusive” disease to benefit from the day’s profits and publicity, so our little autoimmune disease was even farther below the radar than usual with the people in charge. No official I talked to at the staging area had any clue who we were or where we should go. In essence, without a tumor, we were personas non grata.
In desperation, I wandered the grounds until I found “Charity Village,” the section where groups like ours normally are placed. I headed to the tent of one of the international cancer mega-charities, which was festooned with its signature purple and green colors.
Unlike our mishmash of big-hearted volunteers, the folks working for this group are fundraising professionals. They register their cause as a major sponsor in thousands of races a year, recruiting hordes of runners and volunteers from around the world. If one of its runners raises a certain amount of money, the charity picks up their tab not only for the race entry fee, but often hotel and travel costs. About a year before Thing 1’s juvenile dermatomyositis diagnosis, My Love ran a half marathon in Alaska on behalf of this group. In exchange for her raising $3,000 for their cause, the charity picked up about $1,500 in her expenses, meaning only half the money she raised really went to the cancer cause.
If anyone would know whose cage to rattle about our tent, it would be these folks.
Sure enough, once I explained to one of the guys there that the name of my charity was the one plastered across the bright orange T-shirt I had on (“Cure JM. No, not Cure Jim. J. M. Juvenile Myositis. Yeah. It’s no cancer, but it keeps me busy.”), he hit a couple buttons on his phone and in a minute, I had my answer.
“Great, thank you so much,” I said. “By the way, how many runners to you have in the race?”
“About a hundred,” he said.
“Really? We have about a hundred, too,” I said while nodding.
Then I walked away, thinking to myself, “Wow – you folks are really slacking off.”
+ + +
The whole weekend was a huge success for Cure JM.
The foundation raised more than $180,000 with more more still coming in. Team Uncool hit its $20,000 goal (thanks to all of you who donated and for those of you who didn’t, our FirstGiving page is still open).
In addition to our 100 runners, we had more than 40 families – including one from Abu Dhabi -- attend the education conference we put on and more than than 40 medical professionals, including an Order of Canada winner (that’s the Canuck version of the U.S. Presidential Medal of Freedom), come to the daylong medical forum we held at Seattle Children’s Hospital to help doctors and health care personnel learn more about diagnosing and treating juvenile myositis.
Here are some photos taken by me and some of our great Cure JM participants from the weekend. Enjoy. And again, thank you.