There is no way to dampen the resolve and the amazing spirit and support of the Schneider family and their extended families, friends and colleagues.
Long time friends of CURE, Jim and Susan have lent their tireless support, time and energy to this cause and organization in more ways than I can recount. All on behalf of their amazing daughter, Julie. From this annual golf event, which continues to raise significant funds for research, to Jim reviewing research grants, to memories I have from way back when Susan and I sat over a makeshift desk in a borrowed office and read names off of mailing labels to each other – double-checking before a mailing went out that we weren’t duplicating and wasting precious postage stamps (one of those images that probably all nonprofit founders have from their early days!). Their loyalty and belief in our ability to find cures if we only put our minds, resources and energy to it, has sustained me and so many others for years.
This year’s 9th Annual Drive for CURE was held at Cantigny Country Club in Wheaton, IL. More than 100 people gathered to golf, play games, try their luck at a raffle and bid on items and experiences in a live auction. Friends and supporters drove in from all across the state and, despite a rainy start, everyone remained in good spirits. Among the camaraderie and great conversation, it is inspiring to remember that all of these people united with the same common goal: to find a cure for epilepsy.
This weekend, if you have 15 minutes, I encourage you to watch this video from TEDMED. Amazing, open conversation and portrayal of what it is like to live with epilepsy – for both the person affected and their loved ones. Leave us a comment and let us know what you think…
It’s the dog days of summer–and beautiful days they have been–and I was thinking maybe I could take a week off between blog posts…not this past week–big mistake…
Amazing activity in the epilepsy world this week, I’m thrilled to say. In no particular order of importance, here are some of the most noteworthy events:
- Last Sunday night, CNN chief medical correspondent Dr. Sanjay Gupta’s documentary “WEED” aired, and opened up some very provocative conversations about “medical marijuana” (or CBD as I’d prefer we call it). Amazing story of a child whose life was turned around miraculously. More research and more conversation is needed.
- The first report has been published from the NIH Epilepsy Phenome Genome Project (EPGP) and Epi4K project; researchers have identified two new genes and implicated 25 distinct mutations in severe childhood onset epilepsies. An international collaboration between researchers at more than 40 institutions across three continents led to the identification of these genes in Infantile Spasms and Lennox-Gastaut Syndrome, two of the most severe epilepsy syndromes. Launched earlier this year, our Infantile Spasms Research Initiative seeks to find a cure for IS. This recent discovery could have a profound impact on that. With these newly identified “driver genes” in IS, we can now study how they cause spasms and look for personalized treatments.
- Our own Associate Research Director Dr. Tracy Dixon-Salazar was featured on NPR’s Here and Now program along with Dr. David Goldstein, director of the Duke Center for Human Genome Variation. They discussed the exciting new genetics researched (mentioned above) published in the scientific journal Nature.
- Here in Illinois, Governor Pat Quinn signed Illinois Senate Bill 1226-the Danny Stanton SUDEP Act-into law. The law requires medical examiners and coroners to include an inquiry about a history of epilepsy and seizures as part of a standard autopsy, and, if an instance of Sudden Unexpected Death in Epilepsy (SUDEP) is determined in Illinois, to report it to a national registry. Terrific work by the Danny Did Foundation, who drove this legislation.
- CURE is thrilled to announce our new Scientific Advisory Board (SAB)! A warm welcome to the wonderful people below for graciously lending their time and expertise to CURE:
Anne Anderson, MD – Baylor College of Medicine
Douglas Coulter, PhD – University of Pennsylvania
Vicky Holets Whittemore, PhD – NINDS Liaison
Jong Rho, MD – University of Calgary
Harald Sontheimer, PhD – University of Alabama Birmingham
Stay tuned next week for the announcement of our 2013 Challenge, Pediatric, Prevention of Acquired Epilepsy and SUDEP grants! This is the research your loyal support and donations enable us to invest in. We can’t wait to get the work going, and see the breakthroughs and progress that result!
Here’s the long and short of it–the part of the marijuana plant that seems to help some patients with epilepsy is not the part that gets you high. So why do we continue to refer to it as “medical marijuana?”
Let’s call it what it is–what we are talking about is a component of marijuana called cannabidiol (CBD). Some companies have been able to extract it and manufacture a synthetic CBD molecule. This is an idea that has been around since Queen Victoria’s day, and research is finally under way to test cannabis-based drugs in various states and conditions.
Tune in to CNN at 8pm ET tonight for the premiere of “WEED”, a documentary by Chief Medical Correspondent Dr. Sanjay Gupta. He’ll discuss this potentially valuable weapon in our arsenal to fight epilepsy, and tell an amazing story about a young girl whose uncontrollable seizures responded miraculously.
Or, learn more about what motivated Dr. Gupta to make this film, and why he changed his position on marijuana.
We look forward to hearing your thoughts…please weigh in via comments below!
We’re enjoying a delightful respite from last week’s miserable heat here in the Midwest. Hope the rest of you are comfortable and enjoying your summers as well.
Thoroughly enjoyed brunch last week with good CURE friends LeeAnn Brigido (fellow CURE founder from Rhode Island) and Randy and Lisa Siegel and their families. They each happened to pick Chicago as a great vacation spot the same weekend, and it was really a treat to spend time with them and their grown up kids! Not surprisingly, the conversation steered toward epilepsy for a bit of our time together, but I think we were very successful at just catching up and enjoying each other. I’m always moved when I reflect back on the way our lives came together and the special things that each person has brought to CURE and this movement.
Meanwhile, across the country, I know that more special people are hard at work planning events and activities for CURE. Check out the events listed below and — if you are able — join us at any or all!!
9th Annual Drive for CURE Golf Outing, Illinois – Thursday, August 22
2013 Christopher Donalty CURE Benefit, New York – Saturday, September 7
Third Annual Teresa’s Birthday Benefit for CURE, California – Thursday, September 12
Madison Friends of CURE, Wisconsin – Thursday, September 19
SAVE THE DATE: The 2014 S4 Walk for Epilepsy will be on Saturday, June 7, 2014!
While I was away last week, our staff and volunteers were busy across the country with research, fundraising and awareness efforts. I’m still playing catch-up.
But, what I also returned to was the harsh reality that epilepsy and it’s potentially cruel consequences never, ever take a vacation.
My sister-in-law emailed me that a gentleman with epilepsy that she had met and come to know working on a political campaign together, had just died.
I did not know Clyde. But, when I read about him (please click through on his picture below), I was struck with how his life paralleled the lives of so many. His death was devastating, but I hope you will take time to also absorb the eloquent description of the impact on his life that epilepsy had—-his struggles to find a suitable job, the side effects of the medications, the fear of the next seizure, and last, but not least, society’s poor understanding and acceptance of the struggles he faced. I feel like I have heard this story time and time again, and yet it continues….
The research you help us support can help us put a stop to these stories. I hope you will join me and many of Clyde’s friends and loved ones in honoring his passion for life, his resilient spirit and his hopefulness. In his memory, for his loved ones, and for all those whose struggles continue, thank you for supporting the research that has the true potential to change and save lives.
I’ll be spending some time away from my computer and cell phone this coming week, to enjoy time in the mountains with family and friends. I hope everyone enjoyed their 4th of July holiday—-look forward to being back in touch soon!
If you’re a researcher reading this (or know or love a researcher!) please help us spread the word about our upcoming July 16th deadline to submit LOIs for our Innovator and Taking Flight Awards.
In Montreal, the International Epilepsy Congress just drew to a close. Prior to that, CURE again co-sponsored the “Workshop on Neurobiology of Epilepsy (WONOEP XII)”: at a stunning, secluded mountain location in Quebec. Representing eleven countries, sixty researchers gathered including our Associate Research Director Julie Milder, PhD, for the twelfth meeting of this Workshop.
The focus was on four emerging technologies used in the study of epilepsy: optogenetics and stem cells; genetics; imaging; and new methods in neurophysiology. Short presentations were followed by ample discussion—always a great way to get new ideas and energy flowing! It was also a great platform for young investigators to showcase their work and interact with more established people in the field.
CURE was well-represented—Julie caught our four current grantees who were present, and snapped this picture on a short break:
And back at CURE—-with the help of many of the folks who attended these meetings and more—including dedicated lay reviewers who contribute their invaluable perspectives on CURE’s scientific investments—we are hard at work reviewing proposals for our next cycle of funding. Stay tuned for the big announcements in August of our Challenge, SUDEP, Pediatric Epilepsies, and Prevention of Acquired Epilepsies Research Awards.
And, of course, none of this would be possible without our supporters and donors. Your contributions are paying off in significant scientific breakthroughs. It is exciting to be in the middle of our review process again, knowing that among the great projects we have to select from, even more breakthroughs will emerge–this is the hope and promise of the work we do, and the work that is going on around the world in research labs and clinics. Thank you for your support, and stay tuned!