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As Mike and Liz stood in the vortex of a virtual tornado at the end of their evening, they reflected on their top 5 whirlwind gala moments:
1. Kurt Florian gave a nod to Jack’s Army in his address. The President of the Epilepsy Foundation of Greater Chicago stood before a packed house and spoke of all of the different ways that the war on epilepsy is being waged, and he specifically mentioned the "grassroots" success of Jack's Army! What great exposure for our little foundation in a room full of epilepsy advocates, lawmakers, clinicians, and researchers.
2. We talked with the evening’s honoree, Susan Axelrod, founder of CURE, congratulating her on receiving the Distinguished Richard N. Rovner Hero Award. We chatted with her about Jack and KCNQ2 and thanked her for inspiring us as parents and as a foundation. It was a wonderful opportunity to personally express our gratitude for the CURE's $300,000 grant to Dr. Cooper.
3. US Senator Dick Durbin announced a $200 million appropriation that he helped set aside for the Department of Defense Peer Reviewed Medical Research Program. Some of these funds will go toward the study of epilepsy and traumatic brain injury in soldiers coming back from war.
4. Illinois Senator Dan Kotowski, whose dad we had met and talked to in the coat check line, talked about his own connection to epilepsy (through the Danny Did Foundation) and the exciting future of medicine in this fight, including medical marijuana.
5. We were moved by the story of the winners of the Hero Award for Inspirational Commitment. Jack and Manjula Pfingston lost their son Zach to sudden unexpected death in epilepsy (SUDEP) in 2009. CURE is leading the way in preventing and finding the cause of SUDEP. All proceeds from their annual golf outing go to Camp Blackhawk for kids with epilepsy. Zach loved that camp.
Heroes Night reminded Mike and Liz what a vibrant, passionate group the epilepsy community is. The gala gave them a chance to recharge their batteries, to network, and to learn. Jack’s Army thanks the Epilepsy Foundation of Greater Chicago for putting on a great event.
To top off the night, Mike and Liz met a new friend. They were seated with Gregg Rosenthal from Mt. Prospect, a man who suffered from seizures as an adult and was eventually forced to get a portion of his frontal lobe removed. Gregg was an advocate in convincing Governor Pat Quinn to declare November epilepsy month. A dedicated golfer, Gregg pledged to attend the Jack’s Army Third Annual golf outing in July.
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CURE awards new epilepsy research grants
In case you didn’t know it, Citizens United for Research in Epilepsy (CURE) is the nation’s largest independent, private funding agency for epilepsy research. Since CURE began in 1998, they have supported 151 projects with more than 26 million dollars. On February 13, 2014, CURE awarded six new research grants in their drive to accelerate epilepsy science and find a cure. And they report a surge in applications this year—a record 200 competitive proposals.
I find it heartening to imagine so many great minds in so many laboratories hard at work. The answer is out there somewhere. This is a good moment to reflect on what it means for Jack’s Army that just last year that our own Dr. Edward Cooper claimed a CURE prize, the “Rock the Block for Pediatric Epilepsy Research Award.”
Let’s consider some numbers.
If you click on the Cure Epilepsy web page, you see a little icon of stick figures. Below the image it says starkly “1 in 26,” a reminder of how many Americans will develop epilepsy at some point in their lifetime. One in 26. That’s a lot of people. It’s an urgent problem.
I don’t know if more than 26 cases of KCNQ2 encephalopathy are known yet, and that’s a global count. Understandably, some might wonder why, among all the deserving research proposals that CURE could choose to fund, they would select Dr. Cooper’s, which targets such a rare form of epilepsy. But Dr. Cooper’s success in vying for coveted grant funds (which went largely into building mouse models that carry three different versions of KCNQ2 mutations) means he made a strong case for the translatability of his research.Dr. Cooper’s research is that promising—not just for the rare group of children like Jack, but for the basic understanding it offers about the essential role potassium channels play in the function of neurons. And that knowledge potentially helps a lot more of those 1-in-26 Americans.
Read more about Dr. Cooper's ongoing work in The Cooper Laboratory at the Baylor College of Medicine here.