Landmark Clinical Trial for Childhood Absence Epilepsy Fills Large Information Gap

susanaxelrod — Fri, 05 Mar 2010 17:48:15 +0000

The epilepsy community–patients and treating physicians–will be the beneficiaries of a landmark clinical trial, which has established guidelines for initial drug therapy for childhood absence epilepsy, the most common form of childhood epilepsy. The multi-site study—under the direction of Dr. Tracy Glauser, Director of the Comprehensive Epilepsy Center at Cincinnati Children’s Hospital Medical Center—is the largest pediatric epilepsy clinical trial ever funded by the National Institute of Neurological Disorders and Stroke (NINDS), of the National Institutes of Health (NIH).

The study is published in yesterday’s New England Journal of Medicine, whose broad reach should help to disseminate this valuable information to all treating physicians–whether epilepsy specialists, general pediatricians, or family practitioners. Data from the trial provide answers we have long sought for how to best treat kids who suffer from absence seizures, also called “petit mal” seizures. It will also inform doctors in their choice of first therapy for these children—some who suffer hundreds of absence seizures a day—and will hopefully result in more children leading seizure-free lives.

We would like to commend the NIH for recognizing the great unmet need to help these children, along with all of the researchers involved under Dr. Glauser’s leadership.

To read more about this clinical trial, visit: http://www.cincinnatichildrens.org/about/news/release/2010/epilepsy-trial-3-4-2010.htm

Catching Up with Some of CURE’s Favorite Scientists

susanaxelrod — Tue, 02 Mar 2010 17:02:39 +0000

I was in San Francisco last week, meeting with some wonderful people who are interested in our cause and also to attend the two-day conference, “Epilepsy Pipeline Update 2010,” sponsored by the Epilepsy Therapy Project. Under the leadership of Warren Lammert, who also has a daughter with epilepsy, ETP is dedicated to speeding up the development of new therapies for epilepsy–both medications and devices.

It was an outstanding conference, with top-notch presentations on innovation, review of the current science of epilepsy, and updates on a variety of therapeutic options in various stages of development for patients with epilepsy. It was also a great networking opportunity for scientists and business investors, which is one of ETP’s key missions.

Speaking of which, I always enjoy the chance to catch up with some of CURE’s favorite scientists—advisors and grantees–many of whom were also in attendance.

me with Jeff Noebels and Tom Sutula, current and former CURE SAB members

Thanks to our Fabulous Research Review Board!

susanaxelrod — Wed, 24 Feb 2010 15:07:03 +0000

This weekend, CURE’s Research Review Board came together in a critical step toward determining which research projects to fund this year. An incredibly dedicated group, this committee helps us throughout the year by providing invaluable input into how to best advance CURE’s mission, and how to best serve the epilepsy community. They bring a unique combination of scientific backgrounds and personal connections to epilepsy in this critical stage of our review process.

I was happy to watch (and occasionally add my two cents) while this amazing group questioned, discussed, and debated, finalizing which proposals go forward for further evaluation at our Scientific Advisory Board Retreat next month. It wasn’t an easy job with so many innovative applications this year, but we all agree that’s a great problem to have!

Tracy Dixon-Salazar, CURE's Scientific Consultant Vicky Whittemore, Stacey Pigott, and Jill Fischer

A big thanks to this fabulous committee under the leadership of CURE Board member Barbara Kelly– Jill Fischer, PhD; Jim Schneider, MD; Stacey Pigott; and Tracy Dixon-Salazar, PhD! We could not do this without you!

Stay tuned for more 2010 research program updates—our Scientific Advisory Board Retreat is coming up soon—and I don’t want to miss this opportunity to also thank all of you, again, for your generous support of epilepsy research. Because of so many of you out there, we are looking forward to awarding a record-breaking number of research grants. This is truly a community effort.

A Fight for Hope from Purdue University

susanaxelrod — Thu, 18 Feb 2010 15:33:32 +0000

One of the things that has been most remarkable to me about CURE and our efforts has been the great relationships and synergy that have come from melding the perspectives of neuroscientists with the energy and passion of patients and family members. It’s a winning combination.

Earlier this week, CURE Board member Jeanne Donalty and loyal CURE volunteer Susan Schneider traveled to Purdue University in Indiana to help highlight the importance of the groundbreaking research in epilepsy that is occurring there. In 2006, Jenna Rickus, PhD and Pedro Irazoqui, PhD combined their interests and talents in CURE’s first interdisciplinary research award, “A Hybrid Cellular-Silicon Neural Prosthetic for Epilepsy.”

Susan, Jeanne, and Dr. Irazoqui at Purdue University's roundtable discussion on epilepsy

Dr. Irazoqui gave a talk on the development of a “closed-loop neural prosthesis for epilepsy,” which offers hope to patients with epilepsy who do not respond to medications. His research team and partners, based on initial work during their CURE grant period, are developing a non-invasive electrode implant (a fraction of the width of a human hair, I’m told) in conjunction with an external receiver/transmitter to predict, detect, and eventually control seizures.

Readings of personal stories from our website served as a prologue to the lecture, and afterward Jeanne and Susan represented CURE by participating in a roundtable discussion to talk about epilepsy and share their views on the need for enhanced research efforts, answering questions from the audience.

The event was videotaped, and will be posted on Purdue’s website when completed. We’re looking forward to linking to it from CURE’s website so we can showcase how patients and scientists can advance this field together when they join forces! The producer of the video, Stephen D. Hall of Hall of Music Productions said, “I wanted to present the problem of epilepsy and the potential in this research in a way that humanizes it for the viewers. I wanted a story that comes from the heart and goes to the heart.” He has named the presentation “A Fight for Hope.”

Thanks to all who participated in this, and made this great opportunity to raise awareness possible!

Research Grant Program in Full Swing!

susanaxelrod — Fri, 12 Feb 2010 22:35:27 +0000

Research grant review is in full swing at CURE! Scientific Reviewers with a wealth of experience and expertise are graciously donating their time to read and comment on this year’s proposals for funding. And so far, the feedback on the quality of this batch has been amazing!

“This is the best set of proposals I have reviewed since participating in the CURE process
and a sign that the organization is attracting some of the best applicants.”

“… a good group with interesting proposals. I do not envy your work of making a final decision.”

Our Program Officer, Danielle

Many of you know Danielle Davis, who is our Program Officer in the CURE office. She is responsible for overall administration of the grant review and selection process. Danielle, with the help of Research Review Board Chair Barbara Kelly and Scientific Consultant Vicky Whittemore, has assigned three experts in the field to review each proposal, and is now making certain evaluations are all back and tallied for the next stage in our rigorous review process. Stay tuned for further updates and progress as we move toward our final selections!

Many thanks to all sixty of our Scientific Reviewers. We know how busy you are, and truly appreciate your willingness to help us make the very best decisions. This would be an impossible feat without you!

A Great Day for Epilepsy Research

susanaxelrod — Fri, 05 Feb 2010 21:29:23 +0000

I just got back from the National Institute of Neurological Disorders and Stroke (NINDS) Advisory Council meeting in Bethesda, MD. At the meeting, Story Landis, PhD, Director of NINDS, NIH and Brandy Fureman, PhD, Program Director of NINDS, NIH, announced a major, cutting-edge new initiative—“Accelerating Research in the Epilepsies”—which recognizes the critical need to advance research efforts. Resulting from CURE’s discussions with the late Senator Kennedy and his staff, together with Drs. Landis, Fureman, others from NINDS and the broader epilepsy community, we are incredibly pleased and excited to see the new focus on epilepsy research funding and collaboration!

The Advisory Council, of which CURE’s Scientific Consultant Vicky Whittemore, PhD is also a member, approved the initiative, which has three main components:

NINDS Centers without Walls Program to Promote Collaborative Research in the Epilepsies, which will be “virtual” centers focused on specific topics in areas of epilepsy research that are ready for multi-disciplinary, collaborative efforts;
The Cooperative Program in Translational Research, focused on critical areas such as the development of models of anti-epileptogenesis and treatment-resistant epilepsy; and
The Epilepsies Exceptional, Unconventional Research Enabling Knowledge Acceleration (EUREKA) Program, a special grants program supporting highly innovative and potentially transformative approaches to epilepsy research.

The initiative also includes an Interagency Epilepsies Working Group to advise and inform the initiatives and progress moving forward. Vicky and I are honored to have been invited to participate in this process, too.

As details are flushed out, I can’t help but reflect on what a monumental occasion this is for individuals with epilepsy. This is perhaps the greatest sign to-date that our efforts to raise public awareness about the devastating effects of epilepsy are paying off. We salute all of you who over the years have helped us by advocating, volunteering, donating, and sharing your stories of heartbreak, hopes, and dreams.

Westward Bound Again

susanaxelrod — Tue, 02 Feb 2010 18:53:28 +0000

I spent a few great days in Denver last week. I flew out Thursday for an amazing event to benefit CURE that was hosted by Kathy and Art Judd that evening. Their loyal and dedicated committee sponsored a warm cocktail reception that brought together so many people impacted by epilepsy–those who have epilepsy themselves or a loved one with epilepsy, and many professionals whose careers revolve around helping improve the lives of people with epilepsy. Amy Brooks-Kayal, MD, who just completed several years on our Scientific Advisory Board and is now Chair of Pediatric Neurology at the University of Colorado, attended. Also, we were so pleased to be able to show off two recent CURE grantees from the University of Colorado—Manisha Patel, PhD, and Audrey Yee, MD. Once again, I was reminded of how the mission of CURE is resonating with so many people, and how so many of them are becoming passionate supporters. The event was inspiring, and almost flawless–the only mistake the entire evening was that we forgot to take pictures to share with you!

Amy Brooks-Kayal, Manisha Patel, and me in the lab

The next day, I had an incredible tour of the University of Colorado, led by Amy Brooks-Kayal and Manisha Patel. It is always a phenomenal experience to visit the labs where scientists are hard at work trying to solve the mysteries of epilepsy. The program at the University of Colorado, under Amy’s watchful and inspiring direction, is amazing to witness firsthand. The state-of-the-art equipment and bright and inquisitive minds of the young researchers are awe-inspiring. I am so grateful for their commitment and excitement at the prospect of turning discoveries into ways to truly understand what happens in the brain leading up to seizures, during seizures, and after seizures. It is a tribute to those of you who support this critical research–this is the work that is truly going to pay off in answers for patients!

A Great Night at the Epilepsy Association of Utah Gala

susanaxelrod — Tue, 19 Jan 2010 21:48:13 +0000

This past weekend, I had the great honor of attending the Epilepsy Association of Utah’s inaugural gala benefit as the keynote speaker. It was an amazing night, and one I won’t soon forget.

Senator Orrin Hatch and me at the Epilepsy Association of Utah gala

Also attending this fabulous event was Senator Orrin Hatch, who received the Association’s 2010 Achievement Award for his bipartisan efforts in the passage of he 1990 Americans with Disabilities Act, and its 2009 Amendment. I had the opportunity to visit with Senator Hatch, and inform him about the dire need to devote greater resources to epilepsy research.

At dinner, I sat with Steve White, PhD and Steven Bealer, PhD, who are both CURE grantees from the University of Utah, as well as Karen Wilcox, PhD, who is a valued member of our Scientific Advisory Board. Their commitment to this cause is just awesome, and it was incredible to hear updates about their research.

And, what an inspiring organization the Epilepsy Association of Utah is! They provide awareness, education, support, and advocacy on behalf of people with epilepsy who live in the state of Utah. They have had some amazing accomplishments in the past few years, including their first benefit this past weekend, which attracted 270 guests.

I received such a warm welcome by so many other parents and family members who have traveled the same path as my family and are so desperate for answers for their children. Together, we can make change happen and bring long overdue attention to epilepsy. It was truly an honor to be there.

Sharing Our Stories

susanaxelrod — Fri, 15 Jan 2010 19:23:09 +0000

For so long, epilepsy and seizures have been feared and misunderstood. There has been such a profound lack of awareness for a disease that affects so many of our friends and loved ones. When my daughter Lauren was growing up, I often felt so isolated–we felt like we were the only ones going through this. It seemed like nobody talked about epilepsy; nobody spoke of devastating seizures, trips to the hospital, endless rounds of medications and the horrific side effects… the interrupted family trips, the sleepless nights, the daily uncertainty, the toll it took on the whole family.

Read "Hope," a poem on our website, written by Jane, the mom of Isabella (pictured here with her dog, Stella)

When we finally found others who had also been suffering silently, and started sharing our experiences, it was life changing. We weren’t alone. We could find comfort in similar stories, and hope in the sometimes small breakthroughs. Also, we came to realize just how in the dark the general public was when it came to seizures. We decided to put aside our reluctance to publicly display our worst fears. We had to make people take notice.

Read "Ian's Story" on our website, written by Ian's mom, Laura

It’s not easy to share your story. It takes great courage to tell the world what you and your family have gone through, and in many cases, continue to live with everyday. But, we do it because it’s important–it’s important that others who are suffering realize they aren’t suffering alone. It’s important that we make the world understand that epilepsy and seizures are not benign, and that a cure is not an option, but a dire necessity. It’s absolutely crucial that we raise public consciousness of the lack of funding for research that will one day change the story completely–to one of triumph over a disease that afflicts millions.

Read "Linnea's Story" on our website

CURE is incredibly fortunate to have so many great people willing to help us raise awareness by sharing their stories. One place you can read their touching contributions is in our “Faces of Epilepsy” feature on our website. Their bravery and motivation to educate others is inspiring. Please take the time to read our three newest additions: Linnea’s Story, Ian’s Story, and “Hope,” a poem from a mom whose daughter has epilepsy.

You can do your part, too, to educate others. Send these stories to friends, family, coworkers, and neighbors. And if you can, tell them what a cure for epilepsy means to you. Together, we will make a difference and change so many lives.

CURE Research Proposals: Exciting New Opportunities!

susanaxelrod — Tue, 12 Jan 2010 16:52:18 +0000

Today is the day that research proposals for 2010 are due in our office… what an exciting day!

Thanks to all of you, we’ve raised $370,000 online. You are simply phenomenal and it’s so heart-warming to know how many of you are sharing our vision of a world without epilepsy and seizures, and that we are going to be able to fund that much more research in 2010, including our special Friends for a Cure Award!

We’re expecting about 40 grant proposals, and I know among them there will be some fabulous opportunities to really move this field forward. Each grant proposal will be reviewed by at least three independent peer reviewers before advancing for evaluation and discussion by our Research Review Board and Scientific Advisory Board. By the time we announce our final grant awards in May, there are probably 80 individuals who will have participated in this process to pick the most promising research to invest in, and we owe a huge debt of gratitude to all them–scientists and lay people alike–who generously volunteer their time and expertise to this cause.

This is why we do what we do; this is why we exist. We will be able to fund so much more critical research this year because of so many of you. Despite the tough economic times, we have had an amazingly successful year, and will be able to say yes to so many more of our researchers this coming year. Thanks to so many of you out there…you know who you are, and we are so grateful!

Read about the great research we’ve already funded: CURE Grant Recipients