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On the Road

March 7, 2013 3 comments

I haven’t been on the road in a while, so the last 10 days living out of my suitcase have been tiring–but very inspiring. Last week I was in New York City and participated in several rewarding meetings around the Alexandria Summit™ on Medical Research Philanthropy. http://investor.are.com/file.aspx?IID=111908&FID=16157731  The Summit, hosted by Alexandria Real Estate Equities, was an amazing gathering of scientists, advocates and representatives from industry, all dedicated to enhancing the role that medical philanthropy plays in advancing research and scientific discoveries.

After those meetings, I enjoyed meeting up with friends of CURE (both old and new) over several days in New York.

This week I’ve been in Washington.  Monday, friends and colleagues from the epilepsy community gathered for an Institute of Medicine (IOM) meeting focused on developing a screening tool for patients and caregivers.

(l-r) Ilene Miller (Hope for Hypothalamic Hamartomas), Vicky Whittemore, (National Institute of Neurological Disorder & Stroke), Rob Moss (Seizure Tracker), Lisa Moss (Seizure Tracker and Tuberous Sclerosis Alliance) and Kari Rosbeck, (Tuberous Sclerosis Alliance)

(l-r) Ilene Miller (Hope for Hypothalamic Hamartomas), Vicky Whittemore, (National Institute of Neurological Disorder & Stroke), Rob Moss (Seizure Tracker), Lisa Moss (Seizure Tracker and Tuberous Sclerosis Alliance) and Kari Rosbeck, (Tuberous Sclerosis Alliance)

Dr. Joe Sirven, Professor of Neurology/ Chairman Mayo Clinic Arizona, summarizes the IOM report for meeting participants.

Dr. Joe Sirven, Professor of Neurology/ Chairman Mayo Clinic Arizona, summarizes the IOM report for meeting participants.

For the past two days, I’ve been attending a meeting in DC with the Institute of Medicine, reviewing Clinical and Translational Science Awards (CTSA).  The primary goal of the CTSA program is to provide comprehensive services and support for clinical and translational research.  http://www8.nationalacademies.org/cp/projectview.aspx?key=IOM-HSP-12-10

And, if you were at last year’s Chicago Benefit, I know you haven’t forgotten Hugh, Charlie and Jeffrey–they warmed our hearts with their story of dedication and friendship.  This year, they did it again and then some!  The boys’ Hugh-A-Thon fundraising efforts were twice as successful this year–they raised $11,000!!  I was so sorry not to be there, but Bogdan and Samantha, from CURE, were among their fans cheering them on at the Westmont High School pool!

The Hugh-A-Thon boys take a quick break for a photo op.

The Hugh-A-Thon boys take a quick break for a photo op.

Lapses and Laps

February 26, 2013 3 comments

The rather unusual buzzword these days is sequestration, which looms with a deadline of this Friday, March 1. If these comprehensive budget cuts come to pass, the ramifications on scientific research will be enormous. According to a new report released by United for Medical Research (UMR), the nation’s life sciences sector could lose more than 20,000 jobs and face a $3 billion decline in funding if Congress fails to prevent the 5.1 percent automatic, across-the-board spending cuts to the National Institutes of Health (NIH). These cuts would affect much more than epilepsy research–the breadth of NIH research spans the nation, encompassing many different areas of life science. 2,300 fewer grants would be funded, diminishing the pace of recent scientific breakthroughs. We will continue our push for scientific focus and funding for epilepsy and many other neurological diseases. Concerned? If so, share your thoughts with your legislators. http://www.cureepilepsy.org/news/sequestration.asp

And, Charlie, Jeffrey and Hugh are at it again this year! I’m sure those of you who joined us at our Chicago event last June will remember our three remarkable superstars: Charlie, Jeffrey and Hugh. This trio is the best of friends and when Hugh was struggling with epilepsy, Charlie and Jeffrey couldn’t sit by the sidelines. They decided to raise funds for epilepsy research by swimming lap after lap in a local  pool—a “Hugh-A-Thon” they called it. They knocked on doors, spread the word and ended up raising over $6,000—an amazing accomplishment!  We were lucky enough to hear their stories at our event:  http://www.cureepilepsy.org/aboutcure/video/chicago2012-Hugh.asp

This Saturday, March 2, they will be back in the Westmont High School pool, hoping to raise $10,000 for epilepsy research this year. You can find more details about the “Hugh-A-Thon” on CURE’s Upcoming Events page: http://www.cureepilepsy.org/events/upcoming.asp. Let’s help them reach their goal!

There are only two days left to bid on an unforgettable “Once in an Iceland” adventure! Details on this incredible trip for two can be found at http://www.cureepilepsy.org/events/2013/iceland.asp. All proceeds support epilepsy research. Bid quickly and bid high!

Charlie, Hugh and Jeffrey at the CURE office.

Charlie, Hugh and Jeffrey at the CURE office.

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 8 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!

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