For those of us who live where the leaves and the skies are changing dramatically, this is a time of year to hunker down, prepare for the inevitable frigid temperatures to come, the shortening hours of daylight, and all that that means for our day to day lives.
It can be a time when it’s hard not to feel down at times, which is why I’m so impressed with and thankful for the attitudes and energy of so many CURE friends and supporters who are doing all they can to bolster spirits, raise awareness and raise dollars for research.
I hope you’ll all join me in congratulating Alison Kukla who just ran her first marathon to benefit CURE. What an amazing accomplishment, Alison, and thanks from all of us who benefit from your efforts!
Also, coming up in November, George Koether is racing 4,700 miles from Cape Town, South Africa to Western Australia. Approximately 23 days of Deep Ocean sailing, “The Southern Ocean Sleigh Ride,” as it is called, is what some consider the most extreme sailing in the world! Check out his website, and cheer him on with a donation!!!
Throughout the month of November, Lyndsay Kappel, her husband Steve and their daughter Emme (of North Canton, Ohio) are hosting a fundraising page, Emme’s Epilepsy Fundraiser. Their goal is to raise $1,000. Help them reach their goal and donate now!
From way up north in Ludington, Michigan, where I’m sure the cold weather will hit first, Marnie Nickelson will be hosting Cornhole for CURE, a cornhole tournament on November 9 in support of her son Jett who has epilepsy. Her family and community are truly standing by her and participating!
On November 24, Dr. Tyler Katz is running her first half-marathon to support CURE. Epilepsy is a cause close to Dr. Katz’s heart, as her son, Sammy, suffers from Infantile Spasms and her niece was diagnosed with epilepsy three years ago. Sponsor her race and help bring us closer to a cure by donating here.
Finally, Krystyna Wituszynski will be running a 5k (Gobble Job 5K) in Dallas, Georgia, to support CURE on Thanksgiving Day. We know she’ll have earned her thanksgiving feast that day!
You can help support these great folks and their amazing efforts by simply following the links above. Every contribution not only cheers them on, but contributes to the dollars CURE has to invest in our cutting-edge research program.
And, last but not least, Happy Halloween from Lauren! I was pretty proud of my personal Rock Star!
And it’s not too late…tickets still available if you’re in the NYC area, for Conversations and Canapes on November 14!
We were so excited to launch our new initiative, CURE the Epilepsies: Frontiers in Research this week in Denver! Ivan Soltesz, PhD (longtime friend and former SAB member) presented the inaugural lecture Cell-type Specific Control of Neuronal Circuits in Epilepsy, we got to visit with CURE grantees Manisha Patel, PhD and Amy Brooks-Kayal, MD and we also enjoyed dinner with CURE friends and supporters the evening before.
Research seminars and Grand Rounds are a weekly occurrence at Universities around the country and the world, but we have known for some time that epilepsy research is significantly under-represented in those seminars. This is a fantastic opportunity to raise awareness of the innovative research that is happening in the field, by sponsoring a lectureship during this programs. We plan to sponsor about ten, at different institutions in the US and Canada, in this first year, and are grateful to our friends who have already agreed to host these lectures. Check out the upcoming schedule here and some photos from Denver below!
PS – Introducing Mira Elyse Milder……the newest addition to the CURE family who was born yesterday to our Associate Research Director, Julie Milder and her husband Jake!
It gives me extraordinary pleasure to announce the second cycle of our 2013 research grant cycle. Despite the difficult times we are in, so many of you have done all you can do to enable us to make the greatest investment in epilepsy research to date.
We are indebted to each of you who has joined and contributed to this effort, and are thrilled to announce our latest round of projects to you now. These investigators have gone through a rigorous review process—including peer review by scientists as well as input from stakeholders—and we have every confidence that their work will add meaningfully to our body of knowledge and are representative of the cutting-edge research that CURE has built its reputation on.
Please join me in congratulating and celebrating — these are the moments all of us have worked so hard for!
Multi-year grants up to $250,000 for investigators exploring cutting-edge approaches to curing the epilepsies.
John Huguenard, PhD and Jeanne Paz, PhD (Stanford University)
Janice Naegele, PhD (Wesleyan University)
Prevention of Acquired Epilepsies Awards
Multi-year grants up to $250,000 in support of research into the prevention and treatment of epilepsies that occur after insult to the brain such as traumatic brain injury, stroke, and tumor viral infections.
Detlev Boison, PhD (Legacy Emanuel Hospital and Health Center-Portland, OR)
Amy Brooks-Kayal, MD (University of Colorado Denver) and Shelley Russek, PhD (Boston University School of Medicine)
Raimondo D’Ambrosio, PhD (University of Washington)
Sudden Unexpected Death in Epilepsy (SUDEP) Awards
One-year grants up to $100,000 in support of innovative research that will enhance our understanding and ability to prevent SUDEP.
Gordon Buchanan, MD, PhD (Yale University)
David Paterson, PhD (Boston Children’s Hospital)
Else Tolner, PhD and Arn van den Maagdenberg, PhD (Leiden University Medical Center [LUMC] the Netherlands)
Pediatric Epilepsies Awards
Multi-year grants up to $250,000 in support of research projects addressing the many syndromes that affect children.
Edward Cooper, MD, PhD (Baylor College of Medicine)
Timothy Simeone, PhD (Creighton University)
Stay tuned for reports from Denver, where, this week, we will be launching our “Curing the Epilepsies: Frontiers in Research,” a new Seminar Series.
It’s hard to miss the many stories in the media about patients who do not have access to clinical trials funded by the NIH since the federal government shutdown.
Of course, the most heart-wrenching involve the kids. Children being denied potentially life-saving treatments. I can’t imagine what their loved ones are going through. I read the stories and I watch the interviews, and I am dumbfounded.
I can’t understand what is in the minds of those who decided to put these individuals, and the research and science that leads to treatments and cures, at risk. It is heartless and senseless.
In the long run, all of us are hurt. This week brought the celebration of Nobel Laureates James E. Rothman, Randy W. Schekman, and Thomas C. Südhof, whose transformative research into the cell transport system has brought forth discoveries that can lead to new treatments for diseases such as epilepsy. This work was at least partially funded by the NIH–in my mind, inarguably, a fantastic investment. It helps to expand our biotech industry—advances progress in treating medical conditions while also stimulating the economy.
Even before the shutdown, with the advent of sequestration, we have been hearing more and more from epilepsy researchers and our grantees about the struggles they are facing in their labs. Substantial investments that have been made with both private and public dollars are being squandered. And there is a real and enormous fear that we are losing the next generation of researchers and Nobel Laureates by depriving support for this critically important work. The next generation of Nobel Laureates. Possibly the researcher who will find a cure for one of the epilepsies.
This is a very disturbing time. Please help by letting your voices be heard.
What a great week we had—full of forward momentum and progress in our mission.
Our Annual Board Meeting took place, during which I passed the Chairmanship of the CURE Board on to the amazing Gardiner Lapham — in this past year of transition, I have thoroughly enjoyed working with her and learning from her. If you don’t know her already, I know you will come to admire her and her devotion to this organization as I do.
We also were thrilled to welcome four awesome new Board members — all of whom are powerhouses in their own right, and geared up to help us move faster and faster toward the end goal!
We had to say a heartfelt and fond farewell to Randy Siegel, Barbara Kelly and Jeanne Donalty whose terms on the Board of Directors are up, but who will not be allowed to go far…….each of them has agreed to stay involved on our Research Committee.
Gardiner’s taking over the Chairmanship is allowing me to spend more time on what I truly love and what drove me to start CURE back in ’98—-research. To that end, we welcomed our new Scientific Advisory Board members to Chicago for a day of strategic discussion and brainstorming. So many opportunities, so many needs. As you can imagine, the hard part is prioritizing what to tackle first! We are grateful to these advisors for taking time out of their busy schedules to help us figure out the best paths to cures.
The International League Against Epilepsy (ILAE) wants to hear from all of us—patients, loved ones, professionals alike! They have proposed a new definition, and want to hear your thoughts up until October 1. We’d love to know what you think should be included in the definition–please comment below and we’ll be sure to pass them on to the ILAE.
Busy week ahead for all of us at CURE! Our Board of Directors is assembling in Chicago for our Annual Meeting, followed by our new Scientific Advisory Board that is convening the next day. The forecast is for a week’s worth of beautiful September weather in Chicago—-the sun is shining in all of us!
Stay tuned for pictures and updates!
It’s not often that we find ourselves with the teachable moments we have the past few days. If you haven’t been following the ‘conversations’ in the press and social media, Coach Jerry Kill (University of Minnesota football coach) had another seizure during a game on Saturday. This was the fourth time it has happened so publicly in the last year and a half.
Star Tribune: Assistants come charging to Kill’s defense
This has to have been so painfully difficult for him. I hope that he has felt the support of the entire epilepsy community behind him. We admire his courage, and applaud his willingness to speak out and continue to follow his passions. We are lucky to have him as a courageous leader for all those whose lives are touched by epilepsy.
I’ve read that Jerry is really struggling to gain control of his seizures—not just on game days. I’m sure he has the best doctors, and is following all of the regimens they are recommending. But the fact that his seizures continue speaks to what—to me—is the point most important to teach during this moment: more biomedical research is critically important!
It is simply unacceptable that our understanding of epilepsy and our arsenal of current treatment options leave Coach Kill and 30% of all patients with epilepsy having persistent seizures. Seizures that strike with no warning and put lives and well-being at risk.
Thank you for caring, and please continue to support the work we do that truly has the potential to transform and save lives by eradicating epilepsy.