Behind the Scenes

May 16, 2014 Leave a comment

What a surprise yesterday when Chicago Bears General Manager Phil Emery stopped by the CURE offices to cheer on our CURE team during this frenzied time! His passion and enthusiasm in support for our mission is energizing all of us—what a great leader he is, and I can’t wait for those of you who will be with us Monday night, to hear more from Phil…….

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Phil & I talking benefit plans while my faithful companion Mac sniffs out one of the event goodie bags!

 

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Phil stopping in to cheer on our faithful volunteers Dave Grossman and Geoff Fishwick

And Phil’s not the only celebrity lending his support to CURE and Monday evening’s benefit. The talented actor/artist Billy Zane will be joining us too, and has generously donated one of his paintings for the auction! There will be other exciting items to bid on too, so don’t forget to check them out at Navy Pier Monday night!

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This 1997 painting titled “Yours Mayan Ours” by Billy Zane will be up for auction on Monday evening!

A few weeks ago a few staff members from CURE saw Billy perform in The Sound of Music and had the pleasure of going backstage to meet him after the show!

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Associate Research Director Tracy Dixon-Salazar, Savannah Salazar and CURE Outreach Coordinator Jill Siar backstage with Billy Zane!

I hope everyone has a relaxing and restful weekend – our 16th Annual Benefit on Monday is going to be monumental!

 

 

The Final Countdown

May 14, 2014 Leave a comment

Just five days away……the office is crazy with preparations necessary for hosting a small gathering for more than 1000 of our closest friends…….not to mention James Taylor himself!

We’re looking forward to welcoming many new friends this year as well as so many of you who are our faithful ‘regulars.’  We’re looking forward to seeing all of you, and—if you’ve been with us before—I’m sure you remember the Hugh-a-thon boys, who were recently in the CURE offices. They’ve grown up quite a bit and will be joining us again Monday night–be sure to catch up with them if you spot them in the crowd!

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Jeffrey, Hugh and Charlie at the 2012 Benefit; onstage at the 2013 event; visiting the new CURE offices and at the 2014 Hugh-a-thon swimathon.

Alongside our staff, our wonderful volunteers have been doing just about everything we ask of them—most recently, goodie bags for the benefit! We’re so grateful to all of you who have dedicated time to helping out – we couldn’t do it without you!

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Longtime Friends of CURE Shirley and Geoff Fishwick, Ruben Salazar and Dave Grossman turning the CURE conference room into a t-shirt shop!

 

 

Happy Mother’s Day!

May 9, 2014 Leave a comment

Today’s the day! Your last day to honor a special mother in your life. I hope all of you women reading this – whether you’re an ‘epilepsy mom’ or not –  receive the attention and honor that you deserve tomorrow!

Earlier this week, Secretary of Defense Chuck Hagel was in town to speak at the Chicago Council on Global Affairs. It was great to have a moment to talk to him about how important research into post-traumatic epilepsy is for our military with head injuries.

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With my husband, David, and Secretary of Defense Hagel

Last weekend, our Associate Research Director Tracy Dixon-Salazar, PhD and I attended the 2014 Annual EPIGEN meeting at Duke University. EPIGEN is an international consortium dedicated to tracking epilepsy through genetics. We are getting closer and closer, by understanding a patient’s genetics, to developing better treatments, and it was exciting to learn about some of the cutting-edge research currently taking place around the world.

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David Goldstein, PhD (Duke University), myself, Tracy and Norman Delanty, MD (Beaumont Hospital-Ireland) at the 2014 Annual EPIGEN Meeting at Duke University

On a very special personal note, Board Member Evelyn Nussenbaum had the joy of celebrating her daughter Bea’s Bat Mitzvah in Oakland, CA last weekend. In the everyday chaos that is life, it is always a pleasure to take time and celebrate special moments like these with our nearest and dearest. Mazel Tov, Bea!

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Bea Vogelstein reading from the Torah

Finally, it’s hard to believe our 16th Annual Chicago Benefit is just over a week away! I know a lot of people are hard at work planning another beautiful evening at Navy Pier. Hope to see you there!

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Kacie Cysewski, Development Coordinator, and JIll Siar, Outreach Coordinator, boxed in at CURE headquarters!

 

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!

Springing into Action

April 22, 2014 Leave a comment

I hope everyone had a nice holiday weekend!

Certainly don’t want to jinx anything, but it’s really beginning to feel like maybe this winter is behind us…..as evidenced by folks springing into action to raise research dollars!

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A party in progress: the 6th Annual Calvin’s Cure Event hosted by our dear friends Christy and Michael Kolster in Maine. More than 75 guests attended to honor Christy and Michael’s son Calvin. More than $18,000 was raised for research in epilepsy. We couldn’t be more thankful!

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Guests Mark Foster and John Thurston showing their friend Christy Shake some well-deserved love.

Supporters Jerry Herrera, CeCe Camacho and Natasha Goldman celebrating at Calvin’s Cure

Supporters Jerry Herrera, CeCe Camacho and Natasha Goldman celebrating at Calvin’s Cure

Last week, our amazing pro bono film crew gathered again to shoot the footage for this year’s annual video, to be premiered at our Annual Chicago Benefit. The commitment of these people to helping to further our mission, is so invaluable and energizing. We’re looking forward to yet another incredible video that conveys both the struggles of families and patients as well as the hope and potential of scientific advances. Thank you to the University of Chicago Medicine for allowing us to film in their space.

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Our faithful producer Sarah Hegeman oversaw the entire video shoot once again.

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CURE Research Director Steve White, PhD, Associate Research Directors Tracy Dixon-Salazar, PhD and Julie Milder, PhD with my husband David behind the scenes in the University of Chicago Medicine lab.

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David speaking with our talented cameraman Alan Thatcher who generously donated his time to shoot our annual video.

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Greeted by our amazing research team, Phil Emery, GM of the Chicago Bears arrives at the video shoot to share his personal connection to epilepsy.

And last week, our benefit Planning Committee gathered at CURE offices to collaborate on ideas for this year’s event. We are so fortunate to have such a dedicated team!

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CURE Outreach Manager Erin Dowland presents potential ideas and themes to our Planning Committee

Tickets are selling fast – buy yours here. Hope you can join us!

Fearlessness

April 4, 2014 Leave a comment

Turns out I know a good number of Stanford University alum—many of whom, apparently, actually read their alumni magazine!  I received comments from people who read this article and found it both fascinating and highly understandable (even for those of us without degrees in neuroscience….).  Friends clipped it and sent it to me, having no idea that the work described here was the basis for Drs. Paz and Huguenard’s CURE Challenge Award last year!

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Dr. Paz and Dr. Huguenard

 

It is such amazingly cutting-edge work–I hope you’ll take the time to read the article.

I particularly loved Dr. Huguenard’s quote about  Dr. Paz:

“Fearlessness,” he says. “She started fearless and has become even more fearless. She has a sense of what is possible rather than what is going to be difficult.”

That is so what CURE is about—dreaming of what’s possible, and challenging what is difficult. And it occurs to me that it is also so descriptive of the resilience and hopefulness of the people with epilepsy and their loved ones that I have come to know and work with through my journey with CURE.

Thanks to all of you for believing in what is possible!

 

 

Dividing to Conquer

March 28, 2014 Leave a comment

This is one of those weeks where you just have to have hope that we can and will conquer epilepsy…so much energy and activity and dedication on full display!

Gardiner Lapham walked with the CURE Crew led, once again, by our friend Alison Kukla at the National Walk for Epilepsy in DC on Saturday. As these pictures illustrate, it was a great day for epilepsy and—for once—the sun and its warmth made a more-than-welcome appearance!

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The CURE Crew gathers for a meet and greet before the National Walk for Epilepsy in DC

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Board Chair Gardiner Lapham and some Crew members

Monday, Julie Milder and I were in Bethesda for the ICARE (Interagency Collaborative to Advance Research in Epilepsy) meeting. Each of the past few years this meeting has occurred, I am blown away that we have top representatives from so many of our federal agencies gathered for a full day to report and brainstorm on ways to advance epilepsy research and therapies for patients. Truly outstanding!

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At ICARE with Deputy Director of NINDS Walter Koroshetz, MD, Director of NINDS, Story Landis, PhD and Dr. Howard Koh, Assistant Secretary of Health

Meanwhile, members of our hard-working CURE staff took a field-trip up to Madison, Wisconsin to tour the lab of Dr. Tom Sutula, professor and Chair of the Neurology Department at the University of Wisconsin, and a former SAB member of ours. Our staff members got an inside look at exciting research in progress – as well as some sticker shock when informed of the costs of running a lab!

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Dr. Sutula with CURE staff Tracy Dixon-Salazar, Jill Siar and Samantha Kreindel

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Tom Sutula—in his lab, where so much promising work takes place!

And, in Springfield IL, this week, families gathered for the IL Senate Public Health Committee hearing on a proposed amendment to the medical marijuana law. The amendment earned a unanimous vote to add epilepsy to the list of diseases that can be treated with medical marijuana. Thank you to all of you who wrote letters of support and all of the individuals who advocated for this amendment, especially Margaret Storey who offered her personal testimony at the hearing and graciously submitted CURE’s letters of support. The bill will now be passed to the full Senate for approval!

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Families gathered in Springfield asked the IL Senate to “keep an open mind” as they consider adding epilepsy to the list of approved diseases for which medical marijuana may be prescribed

Lastly, if you’re in the Chicagoland area, make sure you check your mailboxes for the invitation to our May 19th Annual Benefit with James Taylor. If you don’t want to wait, or are out of the area and want to travel to join us, you can also buy your tickets here!!

 

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