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Day #1 at AES

December 6, 2013 2 comments

I think this is –yikes — the 17th Annual American Epilepsy Society meeting in a row I have attended!  The folks that were young investigators when I started, are now the esteemed, established investigators. There’s a new crop of young investigators who fill us all with hope.  Some are our new grantees, and I’m looking forward to meeting them personally to congratulate and encourage them to continue to make epilepsy their career path. It’s fun to look around and wonder which of them will be the leaders in their time, and the ones to make meaningful breakthroughs.

The halls and sessions are filled with so many great individuals—many I’m honored to call friends–who have assisted CURE in so many ways over these years.  Serving on our Scientific Advisory Boards, reviewing grants, helping spread the word to researchers and patients. It is a great community.

Over the next few days, I’ll share pictures with you from just a few of the sessions and meetings going on here in Washington DC–sometimes the greatest challenge is selecting which to attend. But, as always, some of the greatest conversations and networking opportunities happen in the corridors and on coffee breaks!

Had a great 5-hour meeting yesterday of our infantile spasms (IS) team. Researchers shared with each other their first year's work. Here's Dr. Doug Nordli of Lurie Children's Hospital of Chicago.

Had a great 5-hour meeting yesterday of our infantile spasms (IS) team. Researchers shared with each other their first year’s work. Here’s Dr. Doug Nordli of Lurie Children’s Hospital of Chicago.

We gave everybody - our researchers, advisors and CURE staff and Board - a quick break to pose for this picture. What amazing brain power is going into finding a cure for IS.

We gave everybody – our researchers, advisors and CURE staff and Board – a quick break to pose for this picture. What amazing brain power is going into finding a cure for IS.

Dr. Galanapoulou of the Albert Einstein College of Medicine presents her first-year findings.

Dr. Galanapoulou of the Albert Einstein College of Medicine presents her first-year findings.

Chris Dulla, PhD demonstrates some of his progress as our Tracy Dixon-Salazar, PhD and Dan Lowenstein, MD look on.

Chris Dulla, PhD demonstrates some of his progress as our Tracy Dixon-Salazar, PhD and Dan Lowenstein, MD look on.

Late last night Tracy, Steve White, PhD and I met with epilepsy program directors from NINDS and top geneticists in the field to explore opportunities to work together.

Late last night Tracy, Steve White, PhD and I met with epilepsy program directors from NINDS and top geneticists in the field to explore opportunities to work together.

It’s so rewarding to see CURE-funded research so prevalent at this meeting in talks, special interest groups, poster sessions and beyond. We have planted so many seeds that have really taken off over these years. Many of you have enabled us to do this with your support. Please remember—and help us spread the word—-that we have an amazing matching grant that will double all donations received between now and December 31st up to $250,000 !  Now’s a critical time to give, and your support will continue to enable us to fund much more of the innovative research CURE is known for in 2014 and beyond!

From Houston to Oklahoma City

November 22, 2013 1 comment

Keeping up the momentum after last week’s great event in New York, I traveled to Houston and to Oklahoma City for more fantastic exposure for CURE and epilepsy research. I was thrilled to be there to hear Peter Crino, MD, PhD, present his exciting discoveries at the second lecture in our CURE the Epilepsies: Frontiers in Research seminar series.

Great CURE friends Ellen Benninghoven and Michael Schafer welcomed us to Houston with a dinner at their home

Great CURE friends Ellen Benninghoven and Michael Schafer welcomed us to Houston with a dinner at their home

CURE Grantees await the start of Peter Crino's lecture at BCM

CURE Grantees Anne Anderson, MD, Edward Cooper, MD, PhD, Peter Crino, MD, PhD, and Jeff Noebels, MD, PhD, await the start of Peter Crino’s lecture at Baylor College of Medicine.

Thoroughly enjoyed my personal tour of the Gordon and Mary Cain Pediatric Neurology Research Foundation Laboratories at Texas Children's Hospital with Scientific Director and CURE Grantee John Swann, PhD

Thoroughly enjoyed my personal tour of the Gordon and Mary Cain Pediatric Neurology Research Foundation Laboratories at Texas Children’s Hospital with Scientific Director and CURE Grantee John Swann, PhD

CURE board member Renzi Stone and I toured the epilepsy units at the childrens hospital at OU Medical Center

CURE board member Renzi Stone and I toured the epilepsy units at the childrens hospital at OU Medical Center

Taking a Bite out of Epilepsy in the Big Apple

November 15, 2013 2 comments

Last night, we were reunited with our friends in New York for our Annual Reception to benefit epilepsy research. It was a great turnout, with many of our scientists in attendance. Thank you to Willie Geist, a terrific host, and all of our supporters and sponsors who made another evening in the Big Apple a success. See some pictures from the reception below!

This morning, our friends at Morning Joe welcomed Tracy Dixon-Salazar, PhD and I on the show, where Tracy shared the story of how deeply epilepsy has impacted her life – driving her to get a PhD in neurobiology with hopes of better understanding the seizures that plague her daughter Savannah. I was proud to address the progress CURE is making in research, and the endless possibilities for cures awaiting us with the right infusion of resources and attention.

And here’s some hopeful news for patients struggling with uncontrollable seizures–always such welcome new when new devices and treatments become available.

Come rain or shine…

August 23, 2013 3 comments

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.

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Wonderful event volunteers collect raffle tickets.

Host Jim Schneider and fellow golfers.

Host Jim Schneider and fellow golfers.

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Julie Schneider and Savannah Salazar passed out Julie’s delicious homemade cookies at the end of the evening.

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…

Thank you, Chicago!

June 14, 2013 54 comments

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!

Travels with CURE

June 11, 2013 2 comments

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.

David and I with Ann and Mitt Romney

David and I with Ann and Mitt Romney

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!

The Fradkin family gears up for their S4 walk last Saturday.

The Fradkin family gears up for their S4 walk last Saturday.

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!

Ellen and I outside her storefront.

Ellen and I outside her storefront.

We’ll be hard at work the rest of this week preparing for our Chicago Benefit Thursday night. Stay tuned for pictures on Friday!!

San Francisco Supports CURE Again

June 6, 2013 3 comments

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.

Preparations Underway

May 25, 2013 3 comments

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.

Starring in a video is hard work---and our good friend  Karen Accattato , once again, provides the behind-the-scenes hair and make-up for this year’s video star!

Starring in a video is hard work—and our good friend Karen Accattato , once again, provides the behind-the-scenes hair and make-up for this year’s video star!

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!

Long time CURE friend and ambassador Linda Smith with Navy Pier’s executive chef.

Long time CURE friend and ambassador Linda Smith with Navy Pier’s executive chef.

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.

Serious FUNdraisers

May 16, 2013 3 comments

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!

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!

May 10, 2013 3 comments

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!

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!

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