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Serious FUNdraisers
We had special guests at the CURE office today! Hugh O’Donnell, Charlie Mavon and Jeffrey Vitek—better known as the Hugh-A-Thon boys—stopped by, along with their proud mothers, to drop off still more donations. It was wonderful to see all of them again. We were all humbled by their dedication to one another and to funding research to find a cure. Hugh, Charlie and Jeffrey have promised to join us again at our Chicago Benefit. Those of you who attended last year’s event will remember them well. Thank you, boys!!
Charlie, Hugh and Jeffrey with me and our CURE shirts!
Those of you on the west coast, I hope to see you at our 3rd Annual San Francisco Benefit, coming up on Friday, May 31. This year’s reception will be hosted by Nicola Miner and Robert Mailer Anderson; we are grateful for their support.
And on the east coast, our good friends David and Monica Fradkin are gearing up for the 2nd S4 Epilepsy Walk in Southbury, CT. The Walk is held in honor of the Fradkins’ daughter, Sarah. This fun, family-friendly event includes a walk, dinner, contests, silent auction—even a baseball drop! Be sure to sign up today! Last year’s S4 Walk was a huge success and we look forward to being part of this one. Stay tuned for photos!
Champions all around!
This week it’s been almost impossible, if you’re paying any attention to epilepsy research, not to see the amazing breakthroughs out of Scott Baraban’s lab at University of California San Francisco! We are so proud to have played a role in getting this critically important and promising research off the ground. Congratulations, Scott and colleagues!!
On a personal front, I’d like to take this opportunity to also congratulate a personal hero of mine, and my inspiration for CURE and all the work we do. Lauren added another gold medal to her growing collection in the 400 M Walk in the Special Olympics competition on Wednesday. At this pace, she’s on a roll to compete in the Illinois state competition later next month!
Lauren on the winner’s stand!
Last, and most definitely not least, congratulations to all mothers out there—especially the epilepsy moms I have come to know and admire over these many years. I know the toll epilepsy can take on our kids and our families — but I also know the toll it takes on us. So, please take a moment on Sunday to make sure you are celebrated and honored — I will most certainly be thinking of all of you!
Looking Back and Moving Ahead
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!
Group photo of conference attendees with Phil front and center.
Scott Baraban, PhD, spoke at the meeting about his exciting CURE-funded research on stem cell therapies in animal models of epilepsy. All of us at CURE are thrilled with Scott’s success, and we’re proud to have sponsored his initial studies in this area.
Elsa Rossignol and Charles Behr read the new CURE State of Research in the Epilepsies Report.
The Science of Raising Awareness
On Wednesday, Julie Milder, PhD, a member CURE’s growing scientific team, addressed ‘hot topics’ in translational epilepsy research and the critical role CURE plays in the epilepsy research community. We thank Dr. Shanti Frausto for including Julie in his Translational Neuroscience course at Rutgers University, and helping us to spread the word about our science program—about which, of course, we are very proud!
And yesterday, Gardiner Lapham spoke at the George Washington Institute for Neuroscience Symposium. CURE was a co-sponsor of the Symposium, Cortical Development and Epilepsy: From Bench to Bedside. Gardiner shared her personal story and a CURE video presentation, to help instill both a sense of urgency and meaning to this field of study.
Anthony-S. LaMantia, PhD, Director, GW Institute for Neuroscience, with Gardiner.
And, in case you missed it, we are thrilled to welcome back the honorable Hillary Rodham Clinton as our special guest speaker in Chicago on June 13! She was our very first speaker back in 1999, and it’s fitting that we honor her at our 15th Annual Benefit–hope you can join us!! I want to thank this year’s stellar Dinner Committee, which continues to grow. Since we went to print with our invitations, we have added three new members, including Chicago Bears General Manager Phil Emery and his wife Beth! Huge thanks to all!!!
| Ellen Alberding & Kelly Welsh Heidi & Craig Albert Liz & Mike Axelrod Susan & David Axelrod Ann Benschoter Cafaro Livingston Charitable Trust Karen K. Dixon & Nan Schaffer Beth & Phil Emery Ruben Figueres |
Larry Grisolano Carol Jones & Tom Hynes Bernadette Keller & William M. Daley Judy & Scott Leisher Sharon O’Keefe & Hal Moore Linda & Richard Price Cari & Michael Sacks Marla & Eric Sedler Andrea Lavin Solow & Alan Solow |
CURE Heroes
House Leader Eric Cantor (R-Virginia) presented the award to Pat, who was accompanied by his amazing wife, Patty. Up until he met Pat and Patty, and we had a chance to share with him the growing prevalence of this problem, he confessed that he had had no idea.
I spent a fast-paced weekend in DC mingling with actors, politicians and members of the media at the annual White House Correspondents’ Dinner, and all the festivities around it. My personal favorite was watching our long time CURE friend Captain Patrick Horan receive the CURE Heroes Award at the Annual White House Correspondents Brunch.
Pat suffered a head injury in Iraq in 2007 and developed epilepsy as a consequence. His courage knows no bounds, and when he and his wife Patty shared their story to help raise awareness about epilepsy within the military community to the hundreds gathered, I knew that the struggles they have lived with since Pat’s injury have only strengthened their resolve to make a difference in whatever life throws their way.
Over 1.6 million soldiers have served in the current Iraq and Afghanistan conflicts; of those, 320,000 will experience TBI. Between 48,000 and 169,000 soldiers serving in Iraq and Afghanistan are expected to live with post-traumatic epilepsy (PTE) for the rest of their lives. Pat Horan is an outspoken advocate for awareness—in the military community (and even beyond) epilepsy is far too often kept a secret.
As Patty Horan said to the hundreds gathered at the Brunch, “Epilepsy is a silent epidemic in the military community right now. CURE is an excellent organization and we hope that with their help we can break down the barriers to stop this devastating disease.
Pat Horan, Rep. Cantor, David and I listen to Patty Horan at the Brunch
We are grateful for all of our CURE volunteers and love to see young people in particular get involved. Three such youngsters–heroes to CURE–were busy helping out with the mailing for our San Francisco reception this past weekend.
Maddie, Beatrice and Emma hard at work for CURE
Don’t forget! CURE’s 15th Annual Chicago Benefit is coming up on June 13th. We hope you’ll join us at Navy Pier’s grand ballroom, with our Special Guest, the Honorable Hillary Rodham Clinton. Reserve a table for your family and friends!
DC-Bound
Mrs. Clinton speaks to guests at CURE’s 1999 event.
A lot has changed since former Secretary of State Hillary Rodham Clinton spoke at CURE’s 1999 Chicago Benefit, but one thing has remained constant: our focus on funding innovative and ground-breaking research to find a cure. Mrs. Clinton was instrumental in helping us get epilepsy on the map and has been an important part of the awareness movement, directing the National Institutes of Health to host the first White House-Initiated Conference on Curing Epilepsy in 2000.
We are honored that Mrs. Clinton will join us for our 15th Annual Chicago Benefit for what promises to be an unforgettable evening. Tickets are now available online. I hope to see you at Navy Pier on Thursday, June 13th!
As I write this, I’m headed to DC for the 20th Annual White House Garden Brunch. This event, a highlight of the spring season, brings together celebrities, politicians and members of the media to benefit various organizations. It is part of several media events in the nation’s capital this weekend. CURE is honored to be one of the organizations recognized at this year’s brunch, hosted by Friend of CURE Tammy Haddad. Stay tuned for pictures!
Sweet Home Chicago
All of us at CURE are thrilled to welcome the Honorable Hillary Rodham Clinton back to our stage at the 2013 Chicago Benefit. This year marks our 15th anniversary and Mrs. Clinton spoke at our very first Chicago event. Her participation means the world to us and we look forward to an unforgettable evening. We hope you can join us! Mark your calendars for Thursday, June 13th at Navy Pier.
I had the pleasure of speaking at the CEO and Health Advocate reception in Chicago this week, part of the Biotech Industry Organization (BIO) International Convention. I shared Lauren’s story to demonstrate that miracles do happen. The organizations represented at the reception do important work—their employees help make medical miracles happen through diligent research, team collaboration and product testing. BIO represents more than 1,100 biotechnology companies, academic institutions, state biotechnology centers and related organizations in the States and in more than 30 other countries.
Me with James Greenwood, President and CEO of Biotechnology Industry Organization (BIO).
Also close to home, the Illinois Senate Bill 1226 passed unanimously through the Illinois Senate this week, thanks to the efforts of our friends at the Danny Did Foundation and State Senator Dan Kotowski (D-Park Ridge). The law provides for a mandatory inquiry about a history of epilepsy or seizures as a part of an autopsy. If the cause of death is determined to be Sudden Unexpected Death in Epilepsy (SUDEP), the death certificate must be forwarded to the North American SUDEP registry within 30 days. This Bill directly addresses one of the most tragic and little-known areas of epilepsy; we hope that this will inspire more states to enact similar measures. It now moves on to the Illinois House of Representatives.
It’s not that we haven’t been hard at work…
I have fallen behind in my blog postings…….and it’s certainly not because there was nothing to report on. To the contrary, it has been a very busy time, and we take inspiration from the folks in Boston, whose resolve has been strengthened by the adversity they faced.
Francis Collins, Director of NIH, gave the welcoming address at NINDS
Many of us in the epilepsy scientific community gathered in Bethesda last week for the 3rd Curing the Epilepsies 2013: Pathways Forward Conference hosted by the National Institute for Neurological Disorders and Stroke. Having attended all three, a lot of memories were stirred up. The very first, held in March 2000, and initiated by then First-Lady Hillary Clinton, was the conference at which the concept and conversation around CURING epilepsy was introduced for the very first time. It was a sea change in thinking and direction.
But it wasn’t until last week’s conference that I had the distinct and very strong impression that — scientifically, at least — we will never look at the epilepsies in the same way. We will not go back. Although of course we all want to be able to stop seizures and their destruction in as fast a time as possible for the patients who are suffering, it was clear to me that the die has been cast—that we are truly on an irreversible path to uncovering the mysteries that have plagued mankind for so long. Long term answers lie in better understanding of basic mechanisms; identification and understanding of the many causes; discovery of biomarkers and true preventative strategies. This is the research we believe in, and the science that gives me hope that we may one day live in a world free of epilepsy. And the quest for these answers was palpable last week in Bethesda.
In case any of you didn’t see it, we released our 2013 State of Research in the Epilepsies Report at a CURE-sponsored reception before the Conference. We hope you have time to look it through, and please feel free to let us know what you think! We intend this to be a conversation-starter, and believe the Report illustrates both the advances and the continued hurdles we must conquer in our search for cures.
We recently added a new member to our stellar research team. Some of you may remember Tracy Dixon-Salazar, PhD, and her amazing story. We are delighted to welcome Tracy as CURE’s newest Research Manager. She joins Julie Milder, PhD, Research Manager and Steve White, PhD, Senior Research Advisor. Tracy and her family will be leaving sunny California to move to Chicago later this spring.
Julie, Steve and Tracy at Curing the Epilepsies last week.
Last, but certainly not least, our CURE Crew team gathered in DC on Saturday morning to take part in the National Walk for Epilepsy. It was an inspiring event at our nation’s capital and CURE was proud to participate. Thanks to Alison Kukla, this year’s team captain!
CURE Crew team members included Scott, Angela, Alison, Brian, Tracey, Caitlin, Katherine and Mary.
Athletes Who Inspire
Athletes putting their creative energy to work for CURE – we are so fortunate to have so many of them hosting swim-a-thons, fencing, hockey and everything in between. Most recently, spinners in Florida, hockey players in Illinois, and runners in Georgia have all turned their passions into dollars for research!
Faith Kaplan, of Boca Raton, Florida recently hosted her second “Fly for Faith” event to benefit CURE. Dozens of enthusiasts participated in a high-energy, indoor cycling workout, and Faith’s friends and family were all motivated by her determination and commitment to advancing research in epilepsy.
Faith getting ready to “fly.”
Meanwhile, in Senoia, Georgia, Mikki Lewis hosted The Cupid Chase, a 5K run and one mile Encouragement Walk. Mikki’s inspiration is her 11-year-old daughter, Hadley, who was diagnosed with epilepsy at age six. All proceeds benefited CURE, and—we are told—the event included an actual cupid sighting! Families and individuals participated in the Chase, vital funds were raised and awareness about epilepsy was increased—a successful event any way you slice it!
Mikki Lewis with Cupid!
Closer to home, the U14 Chicago Young Americans girls’ hockey team has been raising funds for CURE throughout the season with their Shut Out for Seizures fundraiser. Their motto is “Seize YOUR Freedom,” and both their fundraising and their hockey playing have been successful—the team will be playing at Nationals in San Jose, CA this week! Good luck, girls!
CYA U14 team celebrates another victory.
The Epilepsy Foundation of Greater Chicago is hosting two 5Ks next month, on May 11thand May 18th. To register, please visit their site here. Proceeds will support programs and services for people and families living with epilepsy.
Whether indoors or out, in good weather or bad, CURE’s supporters never stop. We are grateful for their involvement and their energy—together we move, step by step, closer to finding the cures we so desperately need. Thank you Faith, Mikki, CYA and so many others —and please keep the photos and the motivation you give us all coming!
Please visit CURE’s website for more information on hosting your own fundraiser.
Teaming Up and Reaching Out
I can feel the tide turning, each and every day, as more people get involved in getting the word out about epilepsy and in raising vital funds for research. In recent weeks I’ve been so encouraged by the number of personal events and initiatives created and launched by friends and family members of loved ones with epilepsy. People who believe in the power we have when we come together, and people who believe in the power of research to change and save lives.
You may have already heard about 50 Concerts in 50 States, Eric Miller’s effort to promote epilepsy awareness and raise funds over the weekend of March 22-24. At last count, due to Eric’s passion and persistence, 100+ concerts have been scheduled in 48 states. There’s likely one in your area! Check the 50 Concerts website for the latest line-up. Not only is this effort a tribute to Eric’s wife, Carolina, who passed away from SUDEP in 2011, it’s also a wonderful collaboration with CURE, Candlelight Concerts, Team Epilepsy, Epilepsy Foundation and the Doose Syndrome Epilepsy Alliance.
Another collaboration closer to home was the Re: Epilepsy fundraiser held this past Saturday in Highwood, IL. Hannah Jorjorian and her husband Chris Clark, along with Tim Loesch and his wife Melissa, joined forces to raise funds for CURE in honor of Hannah and Tim’s 10-year-old daughter, Maggie. They set out with the goal of raising $3,000–and ended up raising $17,000! What an amazing way to celebrate Maggie while raising funds for research that will help all. The CURE staff was excited to welcome Hannah, Chris and Maggie to our office yesterday, and so glad we could thank them in person!
Hannah, Maggie and Chris at our office.
An update on The Hugh A Thon boys: Jeffrey, Charlie and Hugh haven’t stopped yet! When we checked in with the boys at their swim-a-thon last week, donations totaled $11,000. They have now raised over $15,000 for epilepsy research! GREAT job, boys!!
Don’t forget to keep up with CURE’s upcoming events!
