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 1 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!!

 

From Salt Water to Fresh Water

March 21, 2014 Leave a comment

This week started out in Salt Lake City with the most recent lecture in our great new Seminar Series. Dan Lowenstein, MD presented on Large-Scale Team Science and Epilepsy Genetics to over 60 scientists, including young investigators, senior researchers and clinicians.

Our good friend Karen Wilcox, PhD, Professor of Pharmacology and Toxicology at Utah, hosted Dan who also participated in a poster session where he reviewed young investigators’ posters, followed by a dinner with the students. And, of course, our Research Director, Steve White, PhD, was also a part of the activities.

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Seminar Series Speaker Dr. Dan Lowenstein, host Dr. Karen Wilcox and CURE Research Director Dr. Steve White at the University of Utah

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Dr. Lowenstein and Dr. White catch up with young investigators at a poster session

Dr. Lowenstein presents on the evolving research approach of team science, and epilepsy genetics

Dr. Lowenstein presents on the evolving research approach of team science, and epilepsy genetics

Back in the land of fresh water lakes, our CURE Board of Directors gathered from around the country in Chicago.  We are so grateful to Mesirow Financial, again, for letting us use their fabulous conference rooms for our meetings. Great facilities and inspiring views!

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CURE Associate Research Director Tracy Dixon-Salazar, PhD, discusses exciting research activities at our Board Meeting

Sprucing Up at CURE Headquarters

March 14, 2014 Leave a comment

I was in the CURE offices yesterday and was so excited to see the new office getting ready to accommodate our growing Research team!

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Associate Research Director Tracy Dixon-Salazar, PhD takes a break from moving into her new office

We’re always blown away by the volunteer energy of so many of you. Thanks to Ruben Salazar, t-shirts from many of our CURE Crew events now adorn the wall in the office of our Interim Executive Director, Robin Harding. We can’t wait to add more!

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Outreach Coordinator Jill Siar proudly poses with our CURE Crew t-shirts

I know everyone’s been paying close to attention to the CBD issue – check out CURE’s position statement on our website here.

It is with great excitement that I announce tickets are now available to purchase online for the May 19th Chicago Benefit! We hope you’ll join us for a night dedicated to funding research efforts to find a cure for epilepsy and enjoy some entertainment by Grammy Award Winner James Taylor.

Visitors and Visits

March 7, 2014 Leave a comment

Great day for visitors at the CURE offices today!  As our team is working feverishly to make our upcoming benefit in Chicago on May 19 the best yet, Dr. Steve White, our Research Director, came in from Utah or a few days of meetings.  Always great to have him in person in Chicago.

Thrilled to have Dr. Steve White and Eileen Murray, Executive Director of American Epilepsy Society in the office today!

Eileen Murray, the new Executive Director of the American Epilepsy Society stopped by to meet with us, meet our staff, and tour the CURE offices.  It’s great to have her just a few blocks away!

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Longtime friends and supporters Susan Schneider, host of Drive for CURE and Sherry Healey visit our new CURE offices for the first time

Also, had the rare treat of getting together with long-time CURE friends and supporters Susan Schneider and Sherry Healey. They are part of the original crew of moms who helped get CURE on the map way back when, and have been loyal friends, supporters and boosters ever since.

Amazing to think back to the days when we were literally running this organization around my kitchen table!

Meanwhile, Tracy Dixon-Salazar is making her way back from the first of our new Seminar Series outside our country’s borders. She sent back these pictures from Montreal along with high praise for how well CURE grantee Dr. Jeff Noebels’ presentation was received. Thanks to host Massimo Avoli, MD, PhD, of  Montreal Neurological Institute and Hospital at McGill University  for hosting, and for ensuring that young researchers had plenty of access to Jeff.

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2014 Neuro Epilepsy Day

Epilepsy researchers Jean Gotman, PhD (left), Jeff Noebels, MD, PhD (the wonderful CURE speaker, middle) and Massimo Avoli, MD, PhD (our gracious host, right) take a break from discussing how to cure epilepsy for a quick picture.

Epilepsy researchers Jean Gotman, PhD (left), Jeff Noebels, MD, PhD (the wonderful CURE speaker, middle) and Massimo Avoli, MD, PhD (our gracious host, right) take a break from discussing how to cure epilepsy for a quick picture.

Dr. Frederick Andermann shares stories with the audience about the late Pierre Gloor, one of the most influential leaders in epilepsy research.  This CURE sponsored seminar was the inaugural Pierre Gloor Lecture at McGill University.

Dr. Frederick Andermann shares stories with the audience about the late Pierre Gloor, one of the most influential leaders in epilepsy research. This CURE sponsored seminar was the inaugural Pierre Gloor Lecture at McGill University.

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