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Slash My Husband’s ‘Stache!

November 8, 2012 3 comments

David appeared on Morning Joe this morning, where he raised the stakes on that famous ‘stache!

In all our years of marriage, I have NEVER seen my husband David without his mustache.   So, all of you out there who are excited to see him sans ‘stache–including our good friends at Morning Joe, Joe Scarborough and Mika Brzezinski–think about how I feel!

On Morning Joe this morning, David put that famous ‘stache on the line… for epilepsy research! If we raise $1 million by the end of November, David will shave off the ‘stache on the air. Joe generously kicked off the campaign, donating $10,000.

If you didn’t see the challenge, watch it here!

I am just thrilled; this is another example of our commitment to finding the answers we need, and you can help.  We only do one thing.  We invest in research that will find a cure.

We have already received over $42,000 in donations in the last three hours.  Please join us and Morning Joe to get rid of this ‘stache–and most importantly, to rid this world of epilepsy.

Help change the face of epilepsy…and of David Axelrod by helping us raise $1 million. Donate as much as you possibly can today at www.slashthestache.com. Your support will help us truly transform and save lives. We are so grateful for your help!

Setting Priorities

October 24, 2012 22 comments

We were proud to support a great conference, “Priorities for Pediatric Epilepsy Research,” organized by Anne Berg , PhD (Research Professor in Pediatrics at Northwestern University Feinberg School of Medicine).  Parents, pediatric epileptologists, and other health care professionals gathered to brainstorm about how to effect changes in how kids with epilepsy are treated, how we can understand it better and make improvements,  and how we can collect the data we need to inform future research directions and efforts.

It was a great opportunity to show off our city’s brand new Children’s Hospital (The Ann & Richard H. Lurie Children’s Hospital of Chicago), and share ideas with so many well-intentioned, well-informed individuals.  We have some huge challenges–but also great opportunities to explore!

Check out some pics below from a great two days!

with meeting organizer, Anne Berg

CURE Senior Research Advisor Steve White, PhD welcomes everyone to dinner last night.

Tobias Loddenkemper, MD (Harvard Medical School) and Executive Director Bogdan Ewendt

Tracy Dixon-Salazar, PhD (University of California, San Diego), Lori Hamiwka, MD (Nationwide Children’s), Alica Goldman, MD, PhD (Baylor School of Medicine), and Russell Saneto, DO, PhD (Seattle Children’s Hospital)

with Tracy Dixon Salazar, Anne Berg, Barbara Vickrey, MD, MPH (UCLA), Janna Moore (Epilepsy Support Network of Orange County), Steve White, and Bogdan Ewendt

Neuroscience and Networking in New Orleans!

October 18, 2012 3 comments

Welcome to New Orleans!

It’s been a busy week for our researchers, many of whom were down in New Orleans at the annual Society for Neuroscience (SFN) meeting. More than 28,000 people attended this year—what an amazing place to learn about new ideas for research and to network with future collaborators, both in and outside the field of epilepsy!

Epilepsy’s presence at the conference is definitely growing. This year, there were nearly 200 posters and talks related to the disease. In addition, for only the second year, there was an “Epilepsy Social” (co-sponsored by CURE!), which I’ve been told was packed the ENTIRE time! Much thanks to Chris Dulla for keeping this new tradition going. The more opportunities for people to get in the same room and talk about how to move the field forward, the better!

Ed Dudek, PhD (University of Utah) and Epilepsy Social organizer Chris Dulla, PhD (Tufts University)

Eduardo Pineda, PhD (UCLA), Vicky Whittemore, PhD (NIH/NINDS), Shanti Frausto, PhD (University at Pennsylvania), Theanne Griffith (Northwestern University), and Matt Kelley (UCLA)

Critical Funding for Head Injury

September 5, 2012 Leave a comment

On the TODAY Show this morning, the NFL announced that they are donating $30 million to the NIH for concussion research. Football players, as well as our troops in Iraq and Afghanistan are at high risk of head injury, which often leads to concussions. What wasn’t mentioned but is just as important is that these head injuries also often cause post-traumatic epilepsy–a major, frequently debilitating, and long-term consequence of traumatic brain injury.

This was very exciting news, and this influx of funds will most definitely help us better understand what happens to the brain after head injury.  We are hopeful that the resulting research will also give us greater insights into how we may one day prevent–and until then, better treat—the epilepsy that so often results in these individuals.  What a difference that would make!

Watch the TODAY segment here.

It’s All About the Kids

August 31, 2012 Leave a comment

Bogdan, Gardiner, and I spent the afternoon yesterday in Baltimore at the Kennedy Krieger Institute at the invitation of Gary Goldstein, MD, President and CEO of the Institute.

It was wonderful to see the amazing science and the clear passion to help kids that is behind everything there.  In addition to children with epilepsy, many treated there have autism, cerebral palsy, Down Syndrome and many more rare neuro-developmental syndromes.  These other disorders–especially autism and cerebral palsy–often go hand-in-hand with epilepsy.

The conversations are only beginning, but it was great to see the seeds of potential collaboration that were planted earlier this spring at the NIH Workshop that brought the autism and epilepsy communities together in Bethesda.  Great excitement and great work and insights there–it’s always inspiring to bring scientists who work in the lab together with treating physicians who see the children.  Consider the possibilities!

Half the group had left by the time I took this picture, but I caught those who just couldn’t stop brainstorming! Back: Gary Goldstein, MD (President and CEO); Patti Vining, MD (Director, The John M. Freeman Pediatric Epilepsy Center, Johns Hopkins Hospital); Bogdan and Gardiner. Front: Lainy LeBow-Sachs, MEd (Executive Vice President of External Relations); Tanjala Gipson, MD (Director, Tuberous Sclerosis Clinic, Kennedy Krieger Institute); Joshua Ewen, MD (Director, Clinical Neurophysiology Laboratory, Kennedy Krieger Institute)

Gary Goldstein with Galit Pelled, PhD (Research Scientist, Kennedy Krieger Institute). Galit showed us the research she and her lab are doing using fish… sounds “fishy,” but it’s actually cutting-edge!

Researchers hard at work in Galit’s lab

I hope that you all have a wonderful last weekend of summer.  We are so busy at CURE that it already feels like summer is over (if it ever even began!).  Thank you all for all that you do to support and advance this cause!

 

Leaving the Mountains Recommitted

August 24, 2012 Leave a comment

Everyone has left the beauty of the White Mountains, heading home-as far away as Australia and many places in between, after another very impactful Gordon Research Conference, Mechanisms of Epilepsy and Neuronal Synchronization.  It was an amazing location for a meeting, scenic and isolated, encouraging informal networking in which often unpublished, “off the record” work can be freely shared, covering frontier research in epilepsy and related areas of science.

Chair Carolyn Houser, Ph.D., Department of Neurobiology at UCLA, assembled a stellar group of speakers and poster presentations-she really did a phenomenal job as this year’s Chair.

David Prince, MD, Carolyn Houser, PhD and Daniel H. Lowenstein, MD are energized even after a 14-hour day!

 

From the pictures below, you might think all we did was ‘network’, but truthfully, the only time I was allowed to take pictures was when data was not being shared – no cameras allowed during the conference sessions or of the posters, to allow for free exchange of information.  I know you’d have been proud to have seen all the CURE-funded research behind so much of the cutting-edge research presented, and if you’re a patient waiting for answers, encouraged by the scientists’ momentum and passion.

Hope you all have a great weekend!

Amy Brooks-Kayal, MD, Julie Milder, PhD, Manisha Patel, PhD, Vicky Holets Whittemore, PhD

Helen Scharfman, PhD and Janice Lenzer, 2012 CURE Young Investigator Travel Award Recipient

With Audrey Yee, MD

Jeffrey Noebels, MD, PhD, Kevin Staley, MD, Vicky Holets Whittemore, PhD

Greetings From the White Mountains of New Hampshire

August 20, 2012 Leave a comment

Hello from beautiful New Hampshire!

Day #1 of the fourth Gordon Conference, Mechanisms of Epilepsy and Neuronal Synchronization!  Two hundred neuroscientists from across the globe  have gathered to share ideas and data with each other in the beautiful and inspiring White Mountains of New Hampshire–including SO many of our grantees, advisors, and reviewers. CURE’s investments are being showcased here in a truly staggering and encouraging way.  Many young researchers–10 of whom are here with support from CURE travel grants–are also here, which is such a great opportunity for them to network, hear great talks, and learn from the top minds in the field.

with Julie Milder (CURE Coordinator of Research Operations) and six of our travel awardees. The other four were off networking with colleagues.

This morning began with a viewing of our 2012 CURE video to inspire and motivate.  Often, we find, there are folks working so hard in their labs who really don’t get the magnitude and devastation of this disease they are dedicating their careers to or the hope and promise that their efforts give to patients and their loved ones.

This is the most amazing scientific meeting–so aligned with our mission and so rewarding to see all the junior investigators who will be the ones carrying this mission forward.  This morning, over breakfast, I sat with two researchers who study different aspects of the brain, but have recognized how much they can learn by enhancing their understanding of epilepsy.  I am sure they will also be adding to our understanding of epilepsy going forward!

Thanks to your support, CURE was able, for the 4th time, to be a major sponsor of this important conference.  I know you would be pleased if you could see it in person.  But, more importantly, I know we will all benefit in ways we can’t yet predict from the sharing of data and the building of new potential collaborations that will be happening here all week.

Every single dollar counts. Please help us to support even more of these important conferences.

Back to School Already?!

August 8, 2012 Leave a comment

Summer vacation must be drawing to a close!  Last week, CURE’s Senior Research Advisor, Steve White, came in from Utah to lead a brainstorming/planning session for the coming year. Exciting goals and strategies to further target and focus our research portfolio, expedite our review processes, and evaluate our past investments—this is the behind the scenes work that is going to help move us closer to cures!

Steve White leads a brainstorming session in the office.

Steve with Board member Sharon O’Keefe

In the meanwhile, I want to take a moment to share information on an amazing meeting–for families and professionals–to take place outside of Chicago next month.  Our friend Jim Abrahams, who founded the Charlie Foundation, and his team are hosting their third international symposium on dietary therapies, September 19th – 22nd.

And, don’t miss this heart-warming news about our friends Lisa and Rob Moss’s son Evan!

Hope you are all enjoying the closing weeks of this summer!

Supporting the Next Generation

August 1, 2012 Leave a comment

In a few weeks, nearly 200 people will gather in Waterville Valley, New Hampshire for the 3rd Gordon Conference in Epilepsy, called “Mechanisms of Epilepsy & Neuronal Synchronization Gordon Conference,” which CURE is honored to be a sponsor of.

This year, in addition to that, we have given ten travel awards to young investigators interested in epilepsy research to attend the meeting.  Their excitement at having been chosen to receive the awards was so rewarding… one awardee actually said “This made my year!”  I’m always struck by how this kind of recognition and support–though not huge in dollar amounts–can make such a difference in the careers of young scientists.

The students and post-docs who were awarded come from all over the country:

Students:
Alison Althaus, University of Michigan
Janice Lenzer, CUNY
Pedro Olivetti, Baylor College of Medicine
Jennifer Pearson, University of Colorado, Denver
Fabien Wagner, Brown University

Postdocs:
Christian Cea-Del Rido, Children’s National Medical Center
Heidi Grabenstatter, University of Colorado, Denver
Robert Hunt, University of California, San Francisco
Gaia Novarino, University of California, San Diego
Jeanne Paz, Stanford University

I’ll be in New Hampshire for the conference as well, and very much look forward to meeting them. They represent the future of epilepsy research!  I’ll make sure to share photos!

As always, thanks for your support, which has enabled us to bring so many brilliant minds together to unravel the mysteries of epilepsy.

Planting Seeds

July 26, 2012 Leave a comment

2007 CURE Grantee Dr. Michael Kubek

We often describe the research grants we award as “seed grants.”  I want to share a real-life example of how some of these seeds take root and grow.

CURE Grantee Michael Kubek, PhD  from Indiana University was just awarded a phenomenal grant from the US Army that builds directly on the research we supported back in 2007, and will address such a critical need for our nation’s military (and civilians alike). Read down to the final paragraph to see how CURE’s investment has paid off. We know, too, that the work he is doing with this new grant will also benefit patients with epilepsy, developing new ways to deliver therapies that can more effectively cross the blood/brain barrier.

Congratulations and thanks to all of you who donate and support CURE’s work–you enabled this to happen.  And congratulations to Dr. Kubek!

Every dollar counts… please help us fund the next breakthroughs to find cures!

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