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Time of Year

June 6, 2014 Leave a comment

If you don’t have someone close to you who has just graduated, you’ve likely at least heard bits and pieces of motivational commencement addresses from around the country.  Sentimental nut that I am, I always get a bit teary and reflective.

To fight back those tears, I force myself to think of these ceremonies as commencements, rather than graduations. All the opportunities the future holds. All the promise ahead.

So, I was particularly touched when we received the note below from Ethan Ludmir, who just completed his year as a CURE-sponsored Howard Hughes Medical Institute Research Fellows Program.  Our first crop of ‘graduates’ has completed a year in an epilepsy research lab, and it’s so clear that this truly is a commencement—a commencement of great things! Ethan and Abhijeet Gummadavelli are the future of epilepsy research, embarking on what I am sure will be great careers, and we wish them both the very best!

“I wanted to sincerely thank you for your organization’s support of the projects that Abhijeet and I undertook this year. He and I met at the Med Fellows meeting last week, and got a chance to reflect on the progress, challenges, and achievements of this research year.

Your support has helped spur our interest in epilepsy / neurology research, in terms of both short- and long-term career goals.  The research progress made this year has been exceedingly rewarding, and being a part of the bigger-picture mission to develop preventative and curative therapies for the epilepsies has tremendously fueled my interest in this field.  I am incredibly grateful to CURE for their partnership with HHMI through this program, and please let me know if there is anything I can do in the future to help you and CURE.”

On another note, the other night I had the honor of attending the 2014 Golden Trumpet Awards dinner of the Publicity Club of Chicago, at which our good friends Rick Jasculca and Jim Terman were honored with the prestigious Lifetime Achievement Award for their pioneering three decades of work in public affairs.  Rick and Jim have given so much to CURE since our very first benefit back in 1999—from event support, to PR, to graphic design.  Their friendship has meant so much to CURE and to our success—it was truly heartwarming to see them appropriately honored last night, and to hear Keynote Speaker President Jimmy Carter sing their praises as well!

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2014 Golden Trumpet Awards Keynote Speaker President Jimmy Carter touts the successes of wonderful Friends of CURE Rick Jasculca and Jim Terman

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The ever-humble founders of Jasculca Terman Strategic Communications, Rick Jasculca and Jim Terman accepted the prestigious Lifetime Achievement Award

 

The good news keeps on coming!

May 30, 2014 Leave a comment

While we are still reeling from our fantastically successful benefit with James Taylor on May 19th, we have even more fantastic news to share!

 

RHardingRobin Harding has just joined CURE as our CEO! Many of you have had the opportunity to meet Robin over the last six months as she has served as our Interim Executive Director. For the rest of you, I hope you will introduce yourselves and welcome Robin to her new position in the CURE family. We are all thrilled!

Robin’s leadership experience is guaranteed to help guide us in our pursuit of the research investments that will accelerate our search for cures. We are so excited she has agreed, enthusiastically, to join us at the helm of what is already a terrific and dedicated team!

On behalf of our Board of Directors and our staff, please join us in welcoming Robin.  This is an amazing time for CURE but, far more importantly, this is a time when scientific opportunities abound, and we are all poised and excited to take advantage of them and to watch progress unfold!

Finally, I just want to take one more opportunity to thank Debra Cafaro, our mighty Dinner Chair,  and the Chicago Bears’ Phil Emery for everything they did to make last week’s event so phenomenal!

Sweet Sixteen!

May 20, 2014 Leave a comment

The stars were truly aligned last night as we celebrated our 16th Annual Chicago Benefit at Navy Pier.  I wish that all of you who care so deeply about this cause could have joined us, but you were definitely there in spirit!

The evening was phenomenal in so many ways.  Our largest crowd ever— more than 1100 people—many of them newcomers to this cause! Our very special guest Phil Emery (General Manager, Chicago Bears) and our incredibly awesome Event Chair Debra Cafaro (CEO and Chairman, Ventas, Inc.) joined me in sharing personal stories about our daughters with epilepsy.

And, nothing could have been more delicious frosting on the cake than listening to a fantastic and moving performance by none other than the legendary James Taylor.  He certainly was the soundtrack of my life, and to have him give so generously of his time to help this cause just takes my breath away.

To all of our generous sponsors and supporters who believe in CURE, we sincerely thank you and credit you with having raised a truly remarkable $2 Million.  Scientific opportunities abound right now, and the most painful thing is to not have the funds to be able to invest in them.  Last night will enable us to invest in so much more of the critically needed research in the coming year, and really move all of us closer to the day when we can conquer this disease.

There are also many that deserve a special shout-out because their contributions of time, energy, creativity, wisdom and passion — so many amazing friends, including our devoted friends from Jasculca-Terman, the folks who so generously lent their time and talent to produce the annual video (especially, but not limited to Cyndi Moran, Sarah Hegeman and Alan Thatcher), and an army of spirited volunteers (with a special shout-out to Dave Grossman, Ruben, Geoff Fishwick, Georgia & Dan Casciato). Their efforts help our bottom line dramatically, so that so much more of what we raised can be put directly into our research program.

And last, but certainly not least, our devoted and mighty staff.  They turned not just their work lives, but also their personal lives upside down to drive the success of this event.  Now we can all get back to work—-ok, maybe they have earned a little down time…….. !

From the bottom of my heart, and on behalf of those whose lives have been touched by epilepsy, and generations to come, thanks to all of you!

Family Matters

May 2, 2014 Leave a comment

Last week was the seventh in the inaugural year of our Frontiers in Research Seminar Series. Neurologists and neurology residents gathered at the University of Washington in Seattle for Dr. Kevin Staley’s lecture, ‘Are you only using 75% of your brain?’

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We ran into Dr. Staley again in Houston – here with Julie Milder, PhD and Tracy Dixon-Salazar, PhD

Earlier this week I joined our entire science team–Steve White, Julie Milder and Tracy Dixon-Salazar–in Houston for the When Epilepsy is Catastrophic: Molecular Causes and their Consequences Conference.  The focus of the conference was totally in line with what drove so many of us to form CURE—-those epilepsies that are so profoundly devastating to our kids—that it was a fantastic opportunity for us to support the bringing together of families, researchers and clinicians to delve into what needs to be done to improve and save so many young lives.

We saw a lot of our CURE researchers and advisors there, met some new scientists from outside the field, and loved meeting some new families as well!

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With family members, Amy Brooks-Kayal, PhD and Dr. Story Landis, Director of the National Institutes for Neurological Disorders and Stroke. Was tremendous that Dr. Landis was able to attend the entire meeting and talk with so many of the parents in attendance.

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Over a final lunch with new families – full of food for thought!

Last, but certainly not least, there is just one week left for those of you procrastinators out there, to honor a special mother in your life.  Check out our Mother’s Day campaign to support CURE’s mission!

Day #1 at AES

December 6, 2013 Leave a comment

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 Leave a comment

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 6 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!!

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