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!!

 

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 1 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.

Where to begin?

February 27, 2014 Leave a comment

After a two months hiatus away from my blog, it’s become harder and harder to get back into the swing of posting again.  How and where do I start up again?  There’s certainly been a lot to share with you the last few months, and I’m sorry to have missed the opportunity to do so.

Maybe it’s the interminably long and bitter winter here in Chicago.  But, Wednesday morning the sun was shining on all of us—despite the bitter raw temperature outside!

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Chicago Bears General Manager Phil Emery, Ventas Chairman and CEO Debra Cafaro and myself at the first-ever CURE Corporate Kickoff Breakfast

I love this picture!  Chicago Bears General Manager Phil Emery, Ventas Chairman and CEO Debra Cafaro and I took a few minutes after an amazing Corporate Kick-off Breakfast for our May 19th Benefit with James Taylor to share stories about our daughters—-each of whose lives has been impacted by epilepsy.

A room full of supporters heard Phil share his daughter’s personal story, talk about how for his daughter’s entire life he and his wife have been forced to “make decisions in darkness,” and shared his belief that CURE will ‘shed light’ on the answers we all so desperately seek.

This is going to be our best Chicago Benefit yet, and I hope you can join us! Tickets and sponsorships will be available on our website next week.

I hope you have all been well and that spring is just around the corner for all of us.

And….in case you missed it, please make sure you check out our latest round of research awards just announced earlier this week.  Deepest thanks to all of you who help to make this critically important research happen!!!

Cheers to you!

December 30, 2013 1 comment

chamI hope you are all in the midst of a wonderful holiday season. It’s always amazing to look back and realize how quickly the past year has flown by.

This was a fantastic year of ‘firsts’ for CURE:

  • We launched our first “team” approach to battling one particularly devastating form of childhood epilepsy—-Infantile Spasms. Eight teams of investigators from across the country are working together to make a true difference in the lives of these people.
  • We initiated our Seminar Series “CURE the Epilepsies: Frontiers in Research”. We’ve had fabulous receptions from our hosts in Denver, Houston and New York so far, and have received nothing but fantastic feedback from the students and researchers in attendance.
  •  We partnered for the first time with the Howard Hughes Medical Institute to support the next generation of epilepsy researchers.  This program enables young medical students to work in epilepsy labs with established investigators. Applications are due January 11, 2014.

In addition, of course, all of our CURE-funded research continues in labs around the world, and with our last cycle, we are thrilled to have now supported 159 cutting-edge, transformative research projects since our inception.

Deadlines are fast approaching for the Pediatrics, SUDEP, Challenge and Acquired Epilepsies grants

  • LOI’s are due January 15, 2014
  • Full Applications are due May 1, 2014

And last, but not least, I want to thank you from all of us at CURE for your support this, and every, year. None of this could happen without you.  Whether you are a donor, family member, researcher or clinician, you are what keeps this effort alive and growing, and we give thanks for your support and your belief in this cause every day.

Please, if you’re still making your 2013 charitable donations, remember CURE. Our incredible 2 for one matching grant extends through tomorrow…and if you’ve already donated; please help us spread the word by letting others know about this amazing opportunity. These donations will be critical to supporting even more of this incredibly valuable work in 2014!

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