Sparkly panda (Feb 27)
We did the MDA walk this past weekend. Lucas didn’t love it at the time, but he’s been talking it up every since we left. There was a lot of entertainment for kids, and Luca
s really liked meeting the “robots” (people in full Star Wars costumes), a cowboy, a face-painting clown, and another little boy’s service dog, Zoe. He was especially excited about the sparkly panda the clown painted on his hand.
The event was smaller than we imagined it would be. The Muscular Dystrophy Association has such a presence, we imagined thousands of people. We told our friends who were coming that we would send texts to try to find each other, but the extra planning turned out to be unnecessary. There were probably a couple hundred people there who were with someone affected by muscle disease, a couple hundred more who were staffing or volunteering or entertaining. There were some really sweet moments at the “stage,” including a hip-hop dance performance by a 10 year-old with muscular dystrophy. A crew of Seattle cheerleaders stepped up to do a dance performance, and out of the crowd rolled a teenage girl in a power wheelchair who joined the dance line. She knew the moves, and though her dance moves looked different, she was clearly feeling the music and grooving as much as anyone in the room. It felt really nice to be in place where she could be welcomed, where the crowd would celebrate but not stare at her dance moves.
As we walked away from the event, the two of us felt a little sheepish about the tone of our previous post, worried that we let our politics get ahead of our actual experiences. Although the MDA has a rough past, this experience felt useful to us, and it seemed like it was an empowering experience for a lot of people. So thanks to all of you for sticking with us as we explore our thoughts and feelings through this blog, even when we throw out ideas that are still in formation. And of course many thanks to Jacqui for coming out to the walk with us, and to lots of you for sponsoring us (we reached our fundraising goal)!
Comments (4)
Jocelyn
March 5th, 2013 at 7:01 am
Man, wish we could have been there, too. Thanks so much for walking, and thanks for the post. So glad it turned out to be a positive experience. I have many thoughts on this issue, to save for another day over coffee and treats! Love and hugs
Victory
March 4th, 2013 at 4:34 pm
LOVE the sparkly panda!
Julie Graves
March 4th, 2013 at 1:42 pm
Whoops!…Here’s a correction to my previous note about research trials for SMA: it appears poised to go into Phase 1 trials, awaiting final FDA approval. And my classmate’s granddaughter is Kennedy–slip of the brain.
There is also Federal legislation pending on this front: the House (astonishingly) has just passed a bill, pursued for more than a decade, to establish the National Pediatric Research Network; now it goes to the Senate. And the Affordable Care Act will soon make it illegal to decline health insurance because of preexisting conditions. I feel good about these things–in a more attenuated way than the joy from seeing Lucas going sledding with you, but still, good.
Sending you three wishes for more good outings!
Julie Graves, Albany CA
March 3rd, 2013 at 2:04 am
Krista and Burke,
I was glad to read the Muscular Dystrophy Association event turned out to be unexpectedly positive for you. MDA is supporting the Boston lab of Dr. Alan Beggs whom you have met, and colleagues elsewhere in the U.S. and France, with a grant of over $700,000, to explore the possibilty of an MTM treatment that there is some real optimism about. There is also MDA funding of a new treatment for SMA now going into Phase 3 (advanced) trials, that my classmate, whose granddaughter Madison is affected, is really excited about. Neither of these conditions was considered treatable at all just a few years ago, so it seems like a great thing that there is movement on this front. It isn’t easy to generate support for medical research now, with pitiful levels of NIH funding–and you report that the turnout in Seattle was not huge. So, while no organization is perfect, and in particular accommodation and support for people like Lucas and Madison is an essential goal separate from treatment of the underlying condition, I feel deep optimism that Lucas, Madison, and many other children may get a boost from these efforts. And I’m putting some money behind this idea. Go Dr. Beggs! and Go Lucas!
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