Last week Emma and her parents and Poppa Jerry and Grandma (Mema?) Kathy attended the 2018 CureSMA conference in Dallas, Texas. Most of you know that CureSMA is a foundation dedicated to funding SMA research, SMA education, and supporting caregivers impacted by SMA. It was a hectic, but rewarding 4-day conference.
It was quite an ordeal getting all of Emma’s travel gear to the airport, through security, onto the plane, off the plane, onto the Hertz bus, into the mini-van and to the hotel. Whew!
Not too happy with TSA, on the plane with Poppa and Grandma, with her “headset” on and reading to Grandma.
And No! Emma didn’t sit between them… just while everyone was boarding.
The conference was incredible! Over 1,700 attendees; kids scooting around, between and sometimes over people; the Jadewaters water park… even just the hotel was very, very impressive.
During conference breaks, Emma floated around the water park’s lazy river float trail about 100 times over the four days of the conference. She freaked out the lifeguards as they had never seen a little kid floating by with a neck collar flotation device. I think Mark enjoyed himself as well.
Hmmm… good water, Dad!
Back at the conference there were updates from the 18 or so research and clinical trials that are underway pertaining to SMA. They ranged from gene therapy, to gene editing, to muscle restoration, motor neuron rejuvenation to genetic testing and forecasting. The overall approach that they’re all taking is to develop drug and other therapies that will
FIRST SLOW…. THEN STOP…. THEN CURE SMA
There were breakout workshops on topics about nutrition, PT & OT, caregiver support, early education through public schools, legal and estate planning for families with SMA kids and many other topics.
There were demonstrations of the latest technologies in motorized wheelchairs, robotic arms and genetic testing packages.
The conference is very unique in that it’s really two conferences running parallel to each other. It’s an SMA scientific update conference where researchers from around the world meet and discuss breakthroughs and new ideas. While a second conference for us “common folk” has less scientific, but more life-specific sessions. It really gives the medical and scientific researchers a first-hand understanding of the impact this terrible disease has on SMA patients and their loved ones.
While Emma’s parents attended the sessions, she thoroughly enjoyed herself in the SMA childcare lounge. It was one-to-one babysitting. By the last day, the caregivers were competing to see who got to take care of Emma.
Wheeeee!
The highlight of the conference was Thursday night when there were numerous wheelchair races around an obstacle course between SMA kids and the researchers and medical staff. Of course, the kids won every race, frequently lapping the poor researchers who struggled to complete the course in their loaner wheelchairs.
After the races there was lots of “all-inclusive” games for everyone, snacks and photo ops.
Emma’s not too sure about this particular cowboy/horse combination.
And you should have seen these kids zooming around freaking out their poor parents and many of us innocent bystanders.
Friday we had some time off so we piled into the van and toured Dallas. Turns out the city has changed a bit over the 30 years since we lived there. Eventually we found our old house on Whitehall Drive and then stopped by the Mustangs at Las Colinas for a photo with the ponies.
Friday night was DANCE NIGHT! You haven’t lived till you’ve found yourself in the middle of a dance floor surrounded by twirling, swirling motorized wheelchairs… some with robotic arms that they used to pirouette around the floor. Others had a slightly tamer approach to the dance as you can see below.
Gettin’ down with Dad!
All in all it was an exceptionally valuable conference to attend. Mark and Erin got to meet and spend time with lots of other SMA parents; Kathy had ample opportunity to spend time with Emma and Jerry got his fill of good, technical background information.
There’s more about the conference here with lots more detail and pictures.
And don’t forget to support Team Emma Strong in the 2018 CureSMA Pacific Northwest Walk-n-Roll event. As of today, Team Emma Strong is in second place having already raised over $800 for CureSMA. You can donate to her team here.
EmmaStrong2017 