Narrowly dodging a late season snowstorm, members of Jack’s Army convened in sunny Houston at the Baylor College of Medicine on Thursday, March 13. The Chicago contingent (Mike and Liz Pribaz, Brian Baird, Eric Pierce, Laura Javech, and me, Mike’s sister Gina) was joined by friends Jim Johnson and Scotty Sims and their daughter Harper from Denver and Sara James Butcher from Australia by way of New York. We came for a series of presentations, conversations, and tours at Dr. Ed Cooper’s Molecular Neuropharmacology Lab, or the Cooper Lab, the hub of KCNQ2-related epilepsy research.
[caption id="attachment_361" align="alignright" width="198"] Harper and the friendly sound guy[/caption]
The gathering was billed as a “retreat day,” which sounded somewhat relaxing to us Chicagoans, who had checked into our hotel the night before at 3 AM (note to readers: if visiting Houston in March during the rodeo http://www.rodeohouston.com/, be sure to book your rooms well in advance!). Energized by curiosity and coffee, we arrived at the laboratory to meet the others in a conference room. William and Destin Sims, Scotty's brother and sister-in-law, were there too. It was great to meet them! They made the trip to help entertain Harper, who wasted no time in entertaining all of us. She was perfectly comfortable with all the commotion, charming everyone.
After introductions we prepared to dive into a tidy agenda prepared by Dr. Cooper. But sometimes things don’t go exactly according to plan, and sometimes that’s a good thing. In this case, it was a great thing. Our orderly schedule of events went out the window as a camera crew from the NBC affiliate in Houston arrived to film the parents and researchers. You can watch the segment that aired on the Houston 4:00 news that afternoon here. Our thanks to the production crew from Click2Houston News for doing such a fantastic job and helping us get the word out about our important little corner of epilepsy research.
While the Houston news crew was interviewing the parents in the lab, Liz’s phone rang. It was NBC5’s Nesita Kwan in Chicago, calling to arrange a time to film a similar story back home. Click here to watch Nesita's excellent story on Jack's KCNQ2-related epilepsy that aired the next day on NBC5 Chicago.
Meet the Researchers
[caption id="attachment_318" align="alignright" width="266"] The Cooper Lab Dream Team (L-R): Mingxuan Xu, Nishtha Joshi, Li Li, Zhigang Ji, Ed Cooper, Baouyen Tran, and Angel Lopez (not pictured)[/caption]
At lunch we had an opportunity to get to know the scientists who work in the Cooper lab. It was wonderful to have the opportunity to break bread and share ideas with such a busy and talented group of scientists. They connected with us over sandwiches and conversation about the next steps we can take together.
Two strategies in particular emerged from these discussions, which will be detailed soon. They involve a collective patient database and the development of a professional conference for researchers worldwide who are studying the KCNQ2 gene. In all instances, bringing people and ideas together is paying off for Jack’s Army.
Then it was back to the conference room to learn from each of the scientists about their current projects and findings. Lab scientists do not often present their complicated work to a lay audience like us, but it was clear that they worked hard to create understandable graphics and explanations (and nice animations!). And our blown up schedule from earlier in the day meant that they stayed well into the evening to patiently answer all of our questions. We hope to be able to share some of their educational pieces here on the website in the coming weeks.
The Cooper Lab team are so obviously invested in advancing the science and bettering the lives of children affected by this genetic epilepsy. We returned home from Houston profoundly moved by the Cooper Lab team’s dedication and are excited by their steady progress. We couldn’t agree more with a note we received from Zhigang: “Let’s fight the disease together.”
Snapshots from the Trip
[caption id="attachment_341" align="aligncenter" width="398"] Zhigang Yi shares his findings and outlines his next steps[/caption]
[caption id="attachment_371" align="aligncenter" width="400"] Brian can feel his brain growing while listening to Dr. Cooper[/caption]
[caption id="attachment_335" align="aligncenter" width="400"] Laura, Scotty, and Liz notice familiar mutation numbers on a diagram. This stuff is starting to make some sense![/caption]
[caption id="attachment_331" align="aligncenter" width="400"] Our tour included a peek at some cells with the KCNQ2 defect.[/caption]
[caption id="attachment_324" align="aligncenter" width="400"] Sara, Mike, and Liz stop for a picture[/caption]
[caption id="attachment_338" align="aligncenter" width="400"] We enjoyed the fresh air and walk to lunch on the Baylor Medical campus[/caption]
[caption id="attachment_339" align="aligncenter" width="400"] Impressive waterfall feature![/caption]
[caption id="attachment_373" align="aligncenter" width="400"] Touring the lab[/caption]
[caption id="attachment_359" align="aligncenter" width="400"] Harper and Dr. Cooper. This is what it's all about: helping the kids[/caption]