Great scientific talks this past week at the CURE-sponsored Issues in Clinical Electrophysiology meeting in Watsonville, CA. Researchers and their trainees from all over the world gathered for this intensive two-day meeting focusing on effectively using data derived from patients with epilepsy to drive scientific research towards finding cures. It was exciting to hear from investigators, both young and established, about how patient-centered research can transform lives of people with epilepsy.
During the meeting, participants also took time out to honor Dr. Philip Schwartzkroin for his more than 30 years of devoted research in epilepsy. A huge thank you and shout-out to Phil–he was one of a few brave souls who agreed to lend his esteemed name to our letterhead way back in 1998 and really helped us launch this organization and effort! And, of course, to all the men and women who research epilepsy every single day in search of cures. Thanks to all!
President Obama’s announcement this week of the proposed $100 million Brain Research Through Advancing Innovative Neurotechnologies (BRAIN) initiative raises hope that neurological disorders will finally begin to get the recognition and research funds needed to truly advance our understanding of the brain and how it functions. The project, which will draw resources from the Defense Advanced Research Projects Agency (DARPA), National Institutes of Health (NIH), National Science Foundation (NSF) and major private foundations–the Allen Institute for Brain Science, Howard Hughes Medical Institute, Kavli Foundation and Salk Institute for Biological Studies–will help unlock the many mysteries of disorders like epilepsy and, at CURE, we are thrilled about it, and its potential to transform lives. The President also highlighted the positive economic impact of the BRAIN project, citing the high-tech jobs that will be created by this investment in science and technology.
And to end your week on a bright note, we have yet another adorable CURE fan boasting her CURE gear!
Have a great weekend!!!
Epilepsy’s reach knows no bounds—and, not surprisingly, its impact in developing countries can be much more profound than here in the U.S. and other affluent countries. Dr. Tamara Bugembe, a pediatric registrar volunteering for a fellowship in Cameroon, wrote a compelling piece in The Guardian this past week, highlighting the disparity of epilepsy care and awareness between wealthy and developing countries.
In recent years, we’ve all been aware of the bold efforts by Bill Gates and others to prevent malaria in many of these countries, however little attention has been paid to the large number of men, women and children who survive the disease, but develop epilepsy as a consequence.
We do know that, according to a 2012 study by the World Health Organization (WHO), nearly three-fourths of people with epilepsy in developing countries do not receive adequate therapies. Further, WHO estimates that, in Africa, nine out of ten people diagnosed with epilepsy go untreated.
This article was of special interest to us at CURE, as this year we are supporting our first-ever grant to research the connection between malaria and epilepsy. Under the leadership of Steven Schiff, MD, PhD, Pennsylvania State University, a multi-disciplinary team of researchers is investigating a model for the prevention of epilepsy that can develop in children after malaria. It’s a unique effort by an epilepsy specialist, a malaria biologist, an experimental physicist, a malaria clinician, and an optical imaging expert.
In Dr. Bugembe’s words, “Epilepsy is highly stigmatized and many believe it to be a spiritual rather than medical illness. It is also thought to be contagious, transmitted by touching someone during a seizure.” This misinformation, and the shunning of those with epilepsy, is painful and almost inconceivable for many of us who live with epilepsy.
Much more research is clearly needed in this area, as is the continuing need for better community awareness of and response to epilepsy—not just in our neighborhoods, but around the world. The more advances we can make in our understanding of the biological basis of epilepsy, the closer we come to finding cures, and the closer we will be to the day when epilepsy, around the globe, is viewed as a biomedical condition that can succumb to enhanced research efforts into preventions and cures.
I haven’t been on the road in a while, so the last 10 days living out of my suitcase have been tiring–but very inspiring. Last week I was in New York City and participated in several rewarding meetings around the Alexandria Summit™ on Medical Research Philanthropy. http://investor.are.com/file.aspx?IID=111908&FID=16157731 The Summit, hosted by Alexandria Real Estate Equities, was an amazing gathering of scientists, advocates and representatives from industry, all dedicated to enhancing the role that medical philanthropy plays in advancing research and scientific discoveries.
After those meetings, I enjoyed meeting up with friends of CURE (both old and new) over several days in New York.
This week I’ve been in Washington. Monday, friends and colleagues from the epilepsy community gathered for an Institute of Medicine (IOM) meeting focused on developing a screening tool for patients and caregivers.
For the past two days, I’ve been attending a meeting in DC with the Institute of Medicine, reviewing Clinical and Translational Science Awards (CTSA). The primary goal of the CTSA program is to provide comprehensive services and support for clinical and translational research. http://www8.nationalacademies.org/cp/projectview.aspx?key=IOM-HSP-12-10
And, if you were at last year’s Chicago Benefit, I know you haven’t forgotten Hugh, Charlie and Jeffrey–they warmed our hearts with their story of dedication and friendship. This year, they did it again and then some! The boys’ Hugh-A-Thon fundraising efforts were twice as successful this year–they raised $11,000!! I was so sorry not to be there, but Bogdan and Samantha, from CURE, were among their fans cheering them on at the Westmont High School pool!
The rather unusual buzzword these days is sequestration, which looms with a deadline of this Friday, March 1. If these comprehensive budget cuts come to pass, the ramifications on scientific research will be enormous. According to a new report released by United for Medical Research (UMR), the nation’s life sciences sector could lose more than 20,000 jobs and face a $3 billion decline in funding if Congress fails to prevent the 5.1 percent automatic, across-the-board spending cuts to the National Institutes of Health (NIH). These cuts would affect much more than epilepsy research–the breadth of NIH research spans the nation, encompassing many different areas of life science. 2,300 fewer grants would be funded, diminishing the pace of recent scientific breakthroughs. We will continue our push for scientific focus and funding for epilepsy and many other neurological diseases. Concerned? If so, share your thoughts with your legislators. http://www.cureepilepsy.org/news/sequestration.asp
And, Charlie, Jeffrey and Hugh are at it again this year! I’m sure those of you who joined us at our Chicago event last June will remember our three remarkable superstars: Charlie, Jeffrey and Hugh. This trio is the best of friends and when Hugh was struggling with epilepsy, Charlie and Jeffrey couldn’t sit by the sidelines. They decided to raise funds for epilepsy research by swimming lap after lap in a local pool—a “Hugh-A-Thon” they called it. They knocked on doors, spread the word and ended up raising over $6,000—an amazing accomplishment! We were lucky enough to hear their stories at our event: http://www.cureepilepsy.org/aboutcure/video/chicago2012-Hugh.asp
This Saturday, March 2, they will be back in the Westmont High School pool, hoping to raise $10,000 for epilepsy research this year. You can find more details about the “Hugh-A-Thon” on CURE’s Upcoming Events page: http://www.cureepilepsy.org/events/upcoming.asp. Let’s help them reach their goal!
There are only two days left to bid on an unforgettable “Once in an Iceland” adventure! Details on this incredible trip for two can be found at http://www.cureepilepsy.org/events/2013/iceland.asp. All proceeds support epilepsy research. Bid quickly and bid high!
In all our years of marriage, I have NEVER seen my husband David without his mustache. So, all of you out there who are excited to see him sans ‘stache–including our good friends at Morning Joe, Joe Scarborough and Mika Brzezinski–think about how I feel!
On Morning Joe this morning, David put that famous ‘stache on the line… for epilepsy research! If we raise $1 million by the end of November, David will shave off the ‘stache on the air. Joe generously kicked off the campaign, donating $10,000.
If you didn’t see the challenge, watch it here!
I am just thrilled; this is another example of our commitment to finding the answers we need, and you can help. We only do one thing. We invest in research that will find a cure.
We have already received over $42,000 in donations in the last three hours. Please join us and Morning Joe to get rid of this ‘stache–and most importantly, to rid this world of epilepsy.
Help change the face of epilepsy…and of David Axelrod by helping us raise $1 million. Donate as much as you possibly can today at www.slashthestache.com. Your support will help us truly transform and save lives. We are so grateful for your help!
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!