What an amazing event! Last night was a record-breaking evening here in Chicago. More than 1,000 friends gathered at Navy Pier to support CURE for our 15th Annual Chicago Benefit. With more than $1.4M and counting raised for critical epilepsy research, it was the most successful evening in CURE’s history. Thank you to everyone who attended and especially to Mrs. Clinton for sharing this magnificent night with us. The outpouring of support and the stories shared by speakers and guests alike were inspiring and incredibly touching.
Wish you all could have been there with us! A heartfelt thank you to our many volunteers, donors and in-kind donors!! See you all next year!
For videos from the evening, please visit our video page!
The past few days have been exciting, and full of activity!
David and I were touched and overwhelmed at the response we received after presenting our personal story and information about CURE at Mitt Romney’s Experts and Enthusiasts event in Park City, Utah. As always, I was approached by so many participants who shared their own personal stories about epilepsy—there is no doubt in my mind that epilepsy affects one in 26…..probably even more. We were honored to have been invited to participate, and to have been introduced by Ann Romney—- epilepsy knows no boundaries.
And this weekend, two more CURE activities took place to raise funds and awareness.
Talk about energy—we are so grateful to David and Monica Fradkin in Southbury, CT who hosted their second annual fundraiser for CURE on Saturday. Their S4 Epilepsy Walk benefits CURE. This year’s event included 700 participants who walked, enjoyed a baseball drop, dinner and silent auction of amazing Major League Baseball® packages and items. The Fradkins host the Walk in honor of their 12-year-old daughter, Sarah, who has epilepsy. Meg Schneider, Director of Development, Jeanne Donalty, Board member and several other friends of CURE were excited to participate and represent all of us at CURE. A huge THANK YOU to the entire Fradkin family!
Back in Chicago, Ellen Benninghoven and Michael Schafer, good friends of CURE, put together a unique shopping experience to benefit CURE this past weekend in Chicago. Ellen’s son, Cameron Benninghoven, passed away from SUDEP in 2009, which inspired her to create the Hope4Sudep research project. Their “One of a Kind” fundraiser offered guests the opportunity to purchase beautiful art, antiques, vintage accessories and floral creations. I stopped in, was amazed by the items available and happily bid away on some of the amazing items. Thank you, Ellen and Michael and all of your team!
We’ll be hard at work the rest of this week preparing for our Chicago Benefit Thursday night. Stay tuned for pictures on Friday!!
Evelyn Nussenbaum and her loyal Committee chaired a lovely reception last Friday at the home of Nicola Miner and Robert Mailer Anderson in San Francisco. Our Executive Director, Bogdan Ewendt, and I joined loyal CURE supporters, old and new, to take in the beautiful scenery, hear from Bay Area CURE researchers and advisors, and support vital research. Thanks to Evelyn, her team, and all the friends and supporters who joined us for another fabulous occasion in San Francisco.
There have been a number of scientific breakthroughs in the epilepsy field making news recently. We are encouraged by the research conducted by Ingrid Scheffer, MD, of the University of Melbourne in Australia. (Dr. Scheffer is also a CURE grantee for a research project that focuses on the role genetics may play in SUDEP.) Dr. Scheffer’s research team includes members from Australia, Europe and Canada; their work has uncovered a gene associated with focal epilepsy, the most common form. As reported in the highly-regarded journal Nature Genetics, this discovery has ramifications for diagnosis and new treatment options as well as genetic counseling.
Congratulations and many thanks to Dr. Scheffer for her persistence and dedication to unraveling the mysteries of epilepsy in ways that will be truly felt by patients in the foreseeable future. Researchers are busy in labs around the world in pursuit of the next breakthrough discoveries—we are grateful to all of them.
And, our entire Research Team (H. Steve White, PhD, Julie Milder, PhD and Tracy Dixon-Salazar, PhD) were actually all together in the CURE offices in Chicago today! They were ensconced in our conference room, discussing strategy around CURE’s research program and future directions, along with finalizing guidelines for grant request for proposals, timelines and expectations. We appreciate their efforts!
Three weeks out, and we are all busy prepping for our 15th Chicago Benefit—1,000 of our dear friends and supporters will be joining us at Navy Pier on June 13th and helping us to raise what we are sure will be a record-breaking amount of funds for research! Those of you have been with us in the past know that a portion of the program will include a special video presentation and this year is no exception……our pro bono film crew gathered this week and the video will be rolled out at the event.
Other good friends of CURE were hard at work this week selecting hors d’oeuvres, salad, entrees and wine to be served at the Benefit. It was a tough job, but somebody had to do it! We enjoyed all the wonderful dishes prepared by Navy Pier’s head chef. All of you attending the Chicago Benefit will be be well-fed, indeed!
Hope to see all many of you on the 13th! For information on the upcoming event, please visit CURE’s website.
And last, but definitely not least, all of us at CURE extend our deepest appreciation to all the men and women who are serving–and have served–in the armed forces. This weekend is an important reminder for each of us to reflect on your sacrifices, dedication and service. It is humbling.
Over the last three-plus decades I’ve often joked that I have an honorary medical degree, with a specialty in neurology, of course.
Yesterday, though, I actually received a real honorary doctorate at the commencement ceremony at Colorado College.
It was truly an honor to be recognized in such a way by my alma mater. And, much more importantly, to have CURE and epilepsy highlighted. As is always the case, being able to speak publicly about epilepsy brings out so many stories. It’s like opening the flood-gates. In my short time on the campus, I met and heard about so many others who have either lived personally with epilepsy or have a loved one. And some were people who had never disclosed their connection before.
Not a surprise, of course. One in 26 Americans, as we now know. My hope is that as each of us chooses to share our stories and raise our voices, more and more of those one in 26 will feel empowered to share their stories and strengthen our resolve to put an end to epilepsy. We can do this, and I am grateful to Colorado College for honoring my life’s work, and for giving me yet another platform from which to share what is such a major public health concern that has been neglected for far too long. We are grateful to all of you who have joined us, and continue to be great ambassadors for this cause!
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!!
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!