We were proud to support a great conference, “Priorities for Pediatric Epilepsy Research,” organized by Anne Berg , PhD (Research Professor in Pediatrics at Northwestern University Feinberg School of Medicine). Parents, pediatric epileptologists, and other health care professionals gathered to brainstorm about how to effect changes in how kids with epilepsy are treated, how we can understand it better and make improvements, and how we can collect the data we need to inform future research directions and efforts.
It was a great opportunity to show off our city’s brand new Children’s Hospital (The Ann & Richard H. Lurie Children’s Hospital of Chicago), and share ideas with so many well-intentioned, well-informed individuals. We have some huge challenges–but also great opportunities to explore!
Check out some pics below from a great two days!
On the TODAY Show this morning, the NFL announced that they are donating $30 million to the NIH for concussion research. Football players, as well as our troops in Iraq and Afghanistan are at high risk of head injury, which often leads to concussions. What wasn’t mentioned but is just as important is that these head injuries also often cause post-traumatic epilepsy–a major, frequently debilitating, and long-term consequence of traumatic brain injury.
This was very exciting news, and this influx of funds will most definitely help us better understand what happens to the brain after head injury. We are hopeful that the resulting research will also give us greater insights into how we may one day prevent–and until then, better treat—the epilepsy that so often results in these individuals. What a difference that would make!
Watch the TODAY segment here.
It was wonderful to see the amazing science and the clear passion to help kids that is behind everything there. In addition to children with epilepsy, many treated there have autism, cerebral palsy, Down Syndrome and many more rare neuro-developmental syndromes. These other disorders–especially autism and cerebral palsy–often go hand-in-hand with epilepsy.
The conversations are only beginning, but it was great to see the seeds of potential collaboration that were planted earlier this spring at the NIH Workshop that brought the autism and epilepsy communities together in Bethesda. Great excitement and great work and insights there–it’s always inspiring to bring scientists who work in the lab together with treating physicians who see the children. Consider the possibilities!
I hope that you all have a wonderful last weekend of summer. We are so busy at CURE that it already feels like summer is over (if it ever even began!). Thank you all for all that you do to support and advance this cause!
Everyone has left the beauty of the White Mountains, heading home-as far away as Australia and many places in between, after another very impactful Gordon Research Conference, Mechanisms of Epilepsy and Neuronal Synchronization. It was an amazing location for a meeting, scenic and isolated, encouraging informal networking in which often unpublished, “off the record” work can be freely shared, covering frontier research in epilepsy and related areas of science.
Chair Carolyn Houser, Ph.D., Department of Neurobiology at UCLA, assembled a stellar group of speakers and poster presentations-she really did a phenomenal job as this year’s Chair.
From the pictures below, you might think all we did was ‘network’, but truthfully, the only time I was allowed to take pictures was when data was not being shared – no cameras allowed during the conference sessions or of the posters, to allow for free exchange of information. I know you’d have been proud to have seen all the CURE-funded research behind so much of the cutting-edge research presented, and if you’re a patient waiting for answers, encouraged by the scientists’ momentum and passion.
Hope you all have a great weekend!
Day #1 of the fourth Gordon Conference, Mechanisms of Epilepsy and Neuronal Synchronization! Two hundred neuroscientists from across the globe have gathered to share ideas and data with each other in the beautiful and inspiring White Mountains of New Hampshire–including SO many of our grantees, advisors, and reviewers. CURE’s investments are being showcased here in a truly staggering and encouraging way. Many young researchers–10 of whom are here with support from CURE travel grants–are also here, which is such a great opportunity for them to network, hear great talks, and learn from the top minds in the field.
This morning began with a viewing of our 2012 CURE video to inspire and motivate. Often, we find, there are folks working so hard in their labs who really don’t get the magnitude and devastation of this disease they are dedicating their careers to or the hope and promise that their efforts give to patients and their loved ones.
This is the most amazing scientific meeting–so aligned with our mission and so rewarding to see all the junior investigators who will be the ones carrying this mission forward. This morning, over breakfast, I sat with two researchers who study different aspects of the brain, but have recognized how much they can learn by enhancing their understanding of epilepsy. I am sure they will also be adding to our understanding of epilepsy going forward!
Thanks to your support, CURE was able, for the 4th time, to be a major sponsor of this important conference. I know you would be pleased if you could see it in person. But, more importantly, I know we will all benefit in ways we can’t yet predict from the sharing of data and the building of new potential collaborations that will be happening here all week.
Every single dollar counts. Please help us to support even more of these important conferences.
Summer vacation must be drawing to a close! Last week, CURE’s Senior Research Advisor, Steve White, came in from Utah to lead a brainstorming/planning session for the coming year. Exciting goals and strategies to further target and focus our research portfolio, expedite our review processes, and evaluate our past investments—this is the behind the scenes work that is going to help move us closer to cures!
In the meanwhile, I want to take a moment to share information on an amazing meeting–for families and professionals–to take place outside of Chicago next month. Our friend Jim Abrahams, who founded the Charlie Foundation, and his team are hosting their third international symposium on dietary therapies, September 19th – 22nd.
And, don’t miss this heart-warming news about our friends Lisa and Rob Moss’s son Evan!
Hope you are all enjoying the closing weeks of this summer!
In a few weeks, nearly 200 people will gather in Waterville Valley, New Hampshire for the 3rd Gordon Conference in Epilepsy, called “Mechanisms of Epilepsy & Neuronal Synchronization Gordon Conference,” which CURE is honored to be a sponsor of.
This year, in addition to that, we have given ten travel awards to young investigators interested in epilepsy research to attend the meeting. Their excitement at having been chosen to receive the awards was so rewarding… one awardee actually said “This made my year!” I’m always struck by how this kind of recognition and support–though not huge in dollar amounts–can make such a difference in the careers of young scientists.
The students and post-docs who were awarded come from all over the country:
Alison Althaus, University of Michigan
Janice Lenzer, CUNY
Pedro Olivetti, Baylor College of Medicine
Jennifer Pearson, University of Colorado, Denver
Fabien Wagner, Brown University
Christian Cea-Del Rido, Children’s National Medical Center
Heidi Grabenstatter, University of Colorado, Denver
Robert Hunt, University of California, San Francisco
Gaia Novarino, University of California, San Diego
Jeanne Paz, Stanford University
I’ll be in New Hampshire for the conference as well, and very much look forward to meeting them. They represent the future of epilepsy research! I’ll make sure to share photos!
As always, thanks for your support, which has enabled us to bring so many brilliant minds together to unravel the mysteries of epilepsy.
We often describe the research grants we award as “seed grants.” I want to share a real-life example of how some of these seeds take root and grow.
CURE Grantee Michael Kubek, PhD from Indiana University was just awarded a phenomenal grant from the US Army that builds directly on the research we supported back in 2007, and will address such a critical need for our nation’s military (and civilians alike). Read down to the final paragraph to see how CURE’s investment has paid off. We know, too, that the work he is doing with this new grant will also benefit patients with epilepsy, developing new ways to deliver therapies that can more effectively cross the blood/brain barrier.
Congratulations and thanks to all of you who donate and support CURE’s work–you enabled this to happen. And congratulations to Dr. Kubek!
Every dollar counts… please help us fund the next breakthroughs to find cures!
After all that Pat and Patty Horan have sacrificed for this country, it is indeed heartwarming to see yesterday’s news. Pat and Patty have been friends of mine and CURE’s ever since they appeared in our 60 Minutes segment in October 2009 to speak courageously about how challenging and devastating the seizures that resulted from Pat’s head injury in Iraq were to his recovery and well-being.
Please take the time to read their story of sacrifice, heartbreak, and determination, and re-watch their story on 60 Minutes. In these days, where heroes often don’t get the attention they deserve, I was really touched to see all the media attention to their new home in McLean, VA yesterday and the good folks who reached out to make it happen for them.
Check out the great press:
For some reason that I haven’t yet figured out, many of our wounded warriors with head injuries are reticent to speak publicly about their resulting epilepsy. We know, from a study of Vietnam War Veterans, that 50% with penetrating head injury went on to develop epilepsy (called Post-Traumatic Epilepsy or PTE). We don’t yet know how much PTE we will be seeing from our most recent battles, but we do know that brain injury has been the signature wound, and that often the seizures do not manifest themselves until sometimes many years after the injury.
CURE has had targeted research programs in the Prevention of Epilepsy after Traumatic Brain Injury with the Department of Defense–but much, much more needs to be done. The VA has established Epilepsy Centers of Excellence to support these individuals and their families, and–we hope–to begin to gather the data we need that will help inform future research efforts into prevention, better therapies, and cures. We hope this program will continue to expand, as we know the need is growing.
So, I know you all join me in wishing Pat and Patty our very warmest wishes and the best of luck in their new home. We hope it brings them all the happiness and peace they deserve, and thank them for their heroism and their courage. We’ve seen just a morsel of it in their willingness to speak out about epilepsy–on TV, in the press, in public testimonies… and we know it goes well beyond that and is truly immeasurable and inspiring.