A Busy Start to the New Year
I hope you all had a wonderful holiday season. If you’re like me, it feels like an eternity ago–not just a month.
Not only did we have an incredibly awesome showing of support for our Annual Every Dollar Counts/Every Seizure Matters, pulling in an unprecedented $670,558, but already in this new year many of you are bustling with energy and–in many and varied ways–bringing in even more funds for research and more friends to support this cause. Thanks to all of you!
We were thrilled and touched when Scott Mannis, a college student in NYC, had a cd release party recently. Scott, who has epilepsy, is a very talented musician–as well as a dear friend of ours. A portion of the proceeds from his cd are being donated to CURE! He’s already had a great response, appearing in Billboard Magazine! Read the great write-up in Billboard, “Scott Mannis Fighting Epilepsy Through Music.”
Scott at his cd release party!
Up the coast a bit, in Maine, Christy Shake is gearing up for her February 4th benefit for CURE. I sure wish I could be there, but I know Christy and her husband will share great photos. If you’re in her neighborhood and want more info, email Kris at kris@cureepilepsy.org.
Christy with her son Calvin
And, in our neck of the woods, 13-year old Jonathan Mendyk presented CURE friends Susan and Jim Schneider with $100 in 20-dollar bills that he raised to support epilepsy research. Thank you, Jonathan! You are a true inspiration, and we assure you that every single dollar does count!
And, things are bustling in the CURE office, too. We’ve had numerous conference calls with CURE Scientific Advisory Board members and other experts who generously contribute their time, expertise, and advice. These discussions are the critical first step in selecting the research grants we will be announcing this June. We’re looking forward to being able to fund a record-breaking number of projects thanks to all the hard work and generosity of so many of you.
Save the Date! Our San Francisco Benefit is coming up on April 17th!
I’ll be reporting back to you from San Francisco in the coming days, where we’ll be busy preparing for our April 17 benefit there, convening our own scientific retreat next week, and attending the Epilepsy Pipeline Update Project Conference, sponsored by our friends at Epilepsy Therapy Project.
2011 was a banner year, and I know 2012 will bring even more successes–more awareness and dollars raised, more researchers entering the field, more collaboration among those researchers, and more cutting-edge research underway in labs around the world. Thanks for all that you do to make this happen, and for bringing us closer and closer to a cure!
A Special Message from Lauren
Every Dollar Counts! Happy New Year!
A season for joy, memories, reflections
CeCe Cunningham
You’ve likely seen this image of CeCe Cunningham. Our friend Bruce Bever shot this photo for us during a photo shoot for CURE in 2008. We selected this picture of CeCe as our image of HOPE, and she has graced the cover of our brochure and other materials ever since.
When we received the word that CeCe had died of Sudden Unexplained Death in Epilepsy (SUDEP) just a few months after this photo was taken, our hearts sank. But, along with CeCe’s parents, we have worked to keep the hope in her beautiful face alive for other children living with epilepsy, their families, and future generations.
CeCe’s parents, in their healing process, started CeCe Cares Pediatric Epilepsy Foundation to help other families who are dealing with the emotional trauma and financial burden imposed by pediatric epilepsy. It’s always inspiring how they, and so many other families around the country, channel their grief and despair to make things better for others. In our little corner of the world, epilepsy, I am overwhelmed by the outpouring of new energy, support and enthusiasm in this past year.
Those of you reading this should recognize yourselves, each of you helps us keep our dreams and hopes alive in this season, and always. By supporting us and, so many instances, by rolling up your sleeves and committing to the hard work needed, you’re helping to turn dreams into reality. You fuel our energy and passion to keep this effort not just alive, but thriving.
To each of you, whether you donate money, volunteer time or services, work in an epilepsy lab, treat epilepsy patients, or work in the CURE office, I extend my deepest gratitude. There is no gesture that doesn’t make a difference. There is no gesture that goes unappreciated.
Especially at this time, I send my heartfelt wishes to all the families out there living with epilepsy, especially the kids. I remember the greatest gift of all during the holiday season, was to be allowed a day of celebration with family, just one special day, that was not marred by seizures. We were lucky some years, but others… not so much. I hope that all of you receive that gift this season. Please continue to stand with us in 2012 and beyond in our fight for complete seizure freedom for all, not just on special occasions, but 365 days a year.
Remember, Every Dollar Counts/Every Seizure Matters! Please give to our year-end campaign today. Together, we can find a cure!
If you are in the Chicago area and looking for a last minute Christmas gift, consider an evening with CURE and director Harvey Weinstein as we present an advance screening of Iron Lady starring Meryl Streep on January 12, 2012. For more information, click here or contact kris@cureepilepsy.org.
Hearts and Great Minds in NYC
Carmita, Danielle and I took a quick trip to New York yesterday to brainstorm with an amazing team of folks at Deutsch (a premier full service ad agency, headed up by our friend Donny Deutsch) about strategies to help our cause. Under the leadership of Tyler Helms, we were overwhelmed with these talented individuals and the expertise they brought to the table–but most of all by their passionate willingness to help us move epilepsy out of the darkness and into full prominence as a disease that merits far more focus, attention, and resources than it has historically received. What was also stunning (though shouldn’t be all that surprising given what we know about the prevalence of epilepsy) was that of their team, three had close personal connections to this disease.
We talked about education of the public, awareness-raising, and how to refine our message as clearly as we can about the need and the reasons for the research we invest in. It was so exciting to hear their thoughts. We went home tired, but dreaming of the possibilities!
Try as I might, I couldn't capture the incredible NY skyline, including the Statue of Liberty out the window in this shot. But it doesn't really matter--the heart and soul of NY are pictured here! with Ron, Tyler, Allison, and Megan (Thanks to Dawn too, who isn't in this picture!)
For those of you who are struggling to find the perfect last minute gift for your Chicago-area friend or loved one, consider a ticket to an advance movie screening of The Iron Lady, with special guest, film producer Harvey Weinstein! Get your tickets here.
Also, we’re making great strides in our annual Every Dollar Counts/Every Seizure Matters campaign… another great gift idea! Donations can be made in honor or memory of loved ones.
A Stunning Boston Reception!
Back from Boston after what ended up being a long road trip! And just got these great pictures from our Boston CURE Reception Tuesday evening! Many thanks to the Boston Globe for sponsoring the reception, which brought together old and new friends and CURE researchers. In addition, Anne Finucane announced a CURE 2012 Benefit in the spring. Details and date to come… stay tuned!
Photos by Cheryl Richards courtesy of The Boston Globe
with David and Chris Mayer, publisher of The Boston Globe
Some of our researchers! Dr. Huajun Feng, Dr. Gary Yellen, Dr. Nika Danial, Dr. Amy Yee, and her husband Dr. Eric Paulson
Anne Finucane and Jim Brett
with Abagail and Dr. Micah Hemani and Elizabeth Sucher
Dr. Gary Yellen giving an update of his CURE-funded research
my husband David and Anne Finucane
I always love the CURE desserts!
And remember, Every Dollar Counts/Every Seizure Matters! Please give to our year-end campaign today. Together, we can find a cure!
What Day Is It?!
Not much time to write, but enjoy the pictures below from Duke, where the first NIH Epilepsy Center Without Walls (in genetics, called EPI4K) was launched with a great kickoff meeting between all the collaborators, including the lead groups from University of California San Francisco, the University of Melbourne, and Duke University.
Right now, I’m at the American Epilepsy Society Meeting in Baltimore. It’s wonderful to get the chance to see all of our grantees, reviewers, and CURE friends, and hear of great new progress and discoveries. Also, we had a terrific turnout at our annual Research Reception, where we announced our newest grantees–ten of them! Stay tuned for more information on these exciting additions to our research portfolio!
Dr. Dan Lowenstein speaking at Duke
Dr. David Goldstein
Dr. Sam Berkovic
Epi4K! Epi4K will use the most modern genetic technologies to systematically screen patient genomes for mutations that influence risk of epilepsy. Their work will make use of patient resources from throughout North America, Europe and Australia and will analyze at least 4,000 genomes.
CURE grantees Audrey and Amy Yee--who are cousins! Amy is a breast cancer researcher, but is now doing epilepsy research too, thanks to a CURE grant! Here she is at the American Epilepsy Society Meeting!
Camita and I with Board members from Hope for Hypothalamic Hamartomas, Lisa Dunn, Emma Kane, and Ilene Penn Miller at AES
with Board member Greg Lewis and one of the seizure dogs!
Karen Wilcox (University of Utah), Scott Baraban (UCSF), Howard Goodkin (University of Virginia), and Tim Benke (University of Colorado Denver) at CURE's Research Reception Saturday evening
Kevin Staley (Harvard University), Ivan Soltesz (University of California, Irvine), and Manisha Patel (University of Colorado Denver) at CURE's Research Reception
CURE Research Review Board member Tracy Dixon-Salazar gave her first talk this year at AES. We are so proud of the amazing job she did and the great epilepsy work she is doing!
We had a meeting to talk about the upcoming Institute of Medicine report on epilepsy, too. We're excited for the spring when it's due out!
Kicking it off in San Francisco
Board member Evelyn Nussenbaum treated us to great food and inspiration in San Francisco on Tuesday to kick off her April 17 San Francisco benefit for CURE. Grantee Scott Baraban was there to speak about his cutting-edge research funded by CURE, and the value of CURE to the research community. If you’re in the Bay Area, please get involved—-let’s make our second west coast fundraiser twice as successful as last year! (For more info, you can email Kris: kris@cureepilepsy.org)
Ready for our guests to arrive!
Guests got the chance to mingle.
with Evelyn Nussenbaum and Diana Stewart
Sara Wash and Kara Shell
Stay tuned for a jam-packed week of travel and activity! Pictures from a historic meeting at Duke to come!
Also, in this season of giving, please consider donating to our Every Dollar Counts/Every Seizure Matters year-end campaign. Help us fund more cutting-edge research to find a cure! Please give today!
My Favorite Holiday
We are, of course, grateful all year long to our entire CURE community. But, the Thanksgiving holiday makes us pause, if only for a moment or–hopefully–at least a day to reflect on everybody we are grateful to:
- the families and patients who have joined this effort–many of whom struggle on a daily basis, and deal with great loss–who are speaking up, raising funds and are the heart of this community
- our donors–some of whom know this cause all too well, and others who have enormous hearts–who rally to raise the funds so critical to supporting our research program
- the media, many of whom are beginning to recognize the huge public and personal health burden of epilepsy, and have allowed us some major platforms by which to raise awareness
- our hard-working staff at CURE, whose passion for this cause underlies all that they do each and every day, and
- the scientists and clinicians who are hard at work in their labs and clinics. Without their hard work and passion, we would be lost.
This “takes a village” as the saying goes, and we thank each of you for standing with us in this fight. In your unique and special ways, you give us the hope and energy we need to continue to lead the search for a cure for all the epilepsies.
Best wishes from all of us at CURE to all of you, for a wonderful Thanksgiving holiday!!
Oh yes, and here are some photos from the first-ever “Epilepsy Social” that took place last week at the Society for Neuroscience meeting in Washington DC. Many thanks to Amy Brooks-Kayal, Karen Wilcox, and Tallie Baram for organizing this event and helping to attract more of the 30,000 (!!) neuroscientists assembled there to this field of study!
Tallie with our CURE swag!
Dr. Story Landis, Director of NINDS, gives a speech at the social (I swear she's not singing with the band!)
Living Strong!
with Lance Armstrong!
I’m in Miami for the American Business Council Foundation (ABC)’s Continuity Forum. It’s an amazing conference full of emerging leaders–in business, policy, the arts. It provides a space for them to consider how to use their influence, networks, and resources to consider challenges and find solutions that will bring positive changes in communities across the country. Exciting stuff!
While here, I got the chance to meet with Lance Armstrong! He’s a great guy, and gave an amazingly inspirational speech. I was excited to pick his brain–he has all sorts of great ideas for us. And he’s invited me down to LIVESTRONG‘s headquarters in Austin, TX! I can’t wait to learn from him and his great team.
What’s really cool is that he tweeted about meeting with me and David. With his enormous following, it was truly a huge awareness booster for CURE!
The Halfway Mark
Truth be told, I have never “observed” November as Epilepsy Awareness Month before. To me, for my family, it never really made sense… epilepsy and seizures affected us 365 days a year. Why were we only talking about it one month out of the year?
But, my CURE team and fellow advocates have convinced me this year. If we really focus this month, and put all of our energy behind bringing attention to epilepsy, it can and will make a difference.
So, so far we’re doing pretty well, and these are just a few of the things we’re aware of:
Epilepsy Awareness: We Are Not Alone (This great insert appeared in the Chicago Tribune and on their website)
Beauty, Inside and Out: Susan Axelrod, Epilepsy Advocate (This appeared online at youbeauty.com, created by Dr. Oz)
Sudden Unexplained Death in Epilepsy (an article written in the prestigious New England Journal of Medicine by Dr. Orrin Devinsky)
And, on a global front: Dr. Ingrid Scheffer – Laureate 2012 for Asia-Pacific for the L’Oréal-UNESCO Women In Science Award
We’ve also seen BIG increases on our Facebook and Twitter! Supporters across the country–and oversees!–are liking our posts, contributing their opinions and personal stories, and retweeting and sharing our posts with their friends.
We need all of you to help! Think, if each of us decided to tell one more person about epilepsy each of the remaining days this month! If you’ve seen some other exposure for this cause, or have some great ideas about how to get even more, please email us!
And, a teaser: Stay tuned for pictures from the very first “Epilepsy Social” at the Society for Neuroscience meeting in Washington tonight!
