CURE eUpdate Newsletter:
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CURE Epilepsy
CURE eNews

Letter from CUREDear Friends of CURE,

I have no family member or close personal friend with epilepsy but four years ago I began working with CURE. As a management consultant, I helped the Board develop a strategic plan. This was my introduction to epilepsy and through that work I learned of the dire need of those living with epilepsy, especially those with refractory epilepsy. I knew I wanted to be part of the CURE team.

I hope you find this spring newsletter as exciting as I did. Inside you’ll find the latest research updates from current and former CURE grantees; a list of new CURE publications; an overview of what’s going on in the CURE community, featuring some of our most successful fundraisers this season; details on upcoming events, and more. Allow me to draw your attention to two items in particular.

In April, we published CURE’s 2013 State of Research in the Epilepsies Report. This Report is unique. It is a comprehensive attempt to assess where the research community is making progress and where it isn’t. This year, among other things, we found that research collaboration is increasing, the community of epilepsy researchers is strong and growing, and new advances provide renewed hope that disease modifying therapies or a cure is within reach. At the same time, we found per patient funding for research to be inadequate, research continues to focus on seizure control rather than preventing or stopping disease progression, and investments in infrastructure development are needed to translate discoveries into disease modifying therapies or cures. We encourage you to read the report (available at www.cureepilepsy.org/soe and pass it along to others.

Also in April, I was pleased to be part of a panel at the recent National Institutes of Health (NIH) Conference Curing the Epilepsies 2013: Pathways Forward. I moderated the Pathways Forward Roundtable as part of the three-day conference, which focused on current avenues of scientific research in epilepsy. The panel took a bit of a contrarian view—challenging the notion that we are making sufficient progress fast enough. The discussion was lively, and I (naturally) thought well received. But you should be the judge—you can watch video of the session and the entire conference at http://videocast.nih.gov/pastevents.asp?c=1

Thanks for being part of the solution. No seizures, no side effects, no exceptions!

Greg Lewis
Secretary, Board of Directors

Your Dollars at Work

CURE Forms First 'Dream Team' To Fight Childhood Epilepsy Syndrome
CURE has awarded eight teams of investigators with $1.3 million in grants to proceed with cutting-edge research to find a cure for infantile spasms, a rare childhood epilepsy syndrome. Infantile spasms (IS) can have profoundly negative long-term developmental and cognitive consequences. Currently available treatments are often ineffective and frequently associated with substantial adverse effects.

The teams will be led by the following principal investigators:

  • Chris Dulla, PhD, Tufts University – Boston
  • Aristea Galanopoulou, MD, PhD, Albert Einstein College of Medicine – New York
  • Jeff Noebels, MD, PhD, Baylor College of Medicine – Houston
  • Doug Nordli, MD, Lurie Children's Hospital – Chicago
  • Manisha Patel, PhD, University of Colorado Denver
  • Elliott Sherr, MD, PhD, University of California San Francisco
  • John Swann, PhD, Baylor College of Medicine – Houston
  • Libor Velisek, MD, PhD, New York Medical College
These lead investigators bring a wealth of expertise and perspectives to the team that spans adult and pediatric neurology, basic mechanisms of the epilepsies, animal modeling, human genetics and clinical trial design and execution.

"A big part of what we do at CURE is break down the barriers that have impeded progress towards cures,” said Susan Axelrod, chair and founding member of the organization. “This team is a powerful alliance, and we are proud to have brought them together in pursuit of a cure for one of the most devastating pediatric epilepsies."

This initiative involves investigators at multiple institutions, emphasizing a novel, team approach to research. This pioneering approach encourages the investigators to function as a united team and remain focused on the common goal of finding a cure for Infantile Spasms.

According to Dr. H. Steve White, CURE Senior Research Advisor, "The Infantile Spasms Initiative is unique in that it involves focused 'multidisciplinary team science' that will be driven by the outcomes of the research in a responsive and timely manner."

The initiative is a multi-year commitment of several million dollars. "We are extremely excited about the potential that this focused effort has to further our understanding of the causes of infantile spasms and the translation of basic science into better treatments and eventually a cure." says White.

Breakthrough

Funding from CURE Leads Grantee to Breakthrough for Patients with Epilepsy
In 2004, CURE awarded Scott Baraban, PhD of the University of California San Francisco an initial grant to study whether transplanted stem cells can survive and functionally integrate into the brain of adult mice. The successful results of this study led to a second award in 2007, in which Baraban used the transplantation technique he had previously validated to see if he could correct abnormal brain activity in a mutant mouse. His findings from these initial CURE grants have led to a major breakthrough that holds substantial therapeutic promise for patients with epilepsy.

Published in the May 2013 issue of Nature Neuroscience, Dr. Baraban, Robert Hunt, PhD, and colleagues report that injecting progenitors (stem cells) of inhibitory neurons into the hippocampus of adult epileptic mice (the region of the brain necessary for learning and memory) reduced the frequency of seizures and restored behavioral deficits in spatial learning. Critically important to note is that the transplantation occurred after the development of epilepsy, giving plausible hope for a truly innovative therapy in humans.

CURE's initial funding led to further support from the National Institutes of Health (NIH) and the California Institute of Regenerative Medicine (CIRM) and this publication provides a foundation for future stem cell therapy work that could one day result in a viable, disease modifying stem cell treatment for patients with epilepsy.

CURE is also pleased to have supported Dr. Robert Hunt, the paper's first author, with a CURE Young Investigator Travel Award for the Gordon Research Conference in August 2012.

For more about this breakthrough, visit www.cureepilepsy.org/breakthrough

CURE Community

Calvin's CURE
Dancing the (cold) night away at Calvin’s Cure in Maine

Calvin's CURE
February 2013
Maine


February’s epic snowstorm in Maine didn’t slow down CURE’s good friend Christy Shake, who plowed through the powder to ensure the 5th annual Calvin’s Cure event was the most memorable yet. Hosted by Christy, the event is really a birthday celebration for her son Calvin, who has battled epilepsy since he was two years old. "Like Calvin has done for his entire life, we will persevere, we will struggle toward the goal, we will fight the storm, brave the gale and have a good time tonight," said Christy. That they did - even in two feet of snow, wind whipping, optimism reigned and Christy and her 75 guests danced the night away. The event raised more than $20,000 for research in epilepsy. Read Christy’s blog at www.calvinsstory.com

Hugh

Hugh-a-Thon
March 2013
Illinois


Charlie Mavon, Jeffrey Vitek and Hugh O'Donnell have been best friends for most of their young lives, so when Hugh began to struggle with his epilepsy, Charlie and Jeffrey wanted to help. What they came up with inspired—and touched—the community. For the second year in a row, Charlie and Jeffrey hosted the "Hugh-a-Thon," raising funds for research in epilepsy by collecting pledges and donations for swimming as many laps as possible in 30 minutes. Going door to door, asking family and friends for their support, Charlie and Jeffrey ended up raising more than $15,000 for epilepsy research – nearly triple what they raised last year! This tribute to Hugh was a remarkable achievement that truly underscored the strength of their friendship. CURE was honored to be the recipient of the funds raised from the Hugh-a-Thon.

Re: Epilepsy

Re: Epilepsy
March 2013
Illinois


At first glance, Maggie Loesch is much like any other 10-year-old; she enjoys hanging out with her friends and playing softball. Two years ago, however, Maggie was diagnosed with epilepsy. In her words, "I was diagnosed with epilepsy two years ago and it has changed my life. This has affected me in so many ways. Learning is a big one because it is harder to concentrate when you have my form of epilepsy. Also there is worrying. I always worry that I am going to have a seizure when I am at school, playing softball, or just being with my friends." Maggie’s parents and stepparents wanted to do something not just for Maggie, but for so many other children also affected by epilepsy. They planned and hosted the Re: Epilepsy fundraiser in Highwood, IL. Hannah Jorjorian and her husband Chris Clark, along with Tim Loesch and his wife Melissa, joined forces to raise funds for CURE in honor of Maggie (Hannah and Tim’s daughter). With the help of family and friends they blew past their initial goal of raising $3,000–and ended up raising $17,000! What an amazing way to celebrate Maggie while raising funds for research that will help all. The CURE staff was excited to welcome Hannah, Chris and Maggie to our office to thank them in person!

Fly For Faith

Fly For Faith
February 2013
Florida


Faith Kaplan is an active wife and mother of two young boys. Her personal story, like many others of those with epilepsy, is amazing, as is her resilience. Faith spent three and a half weeks in the hospital after getting encephalitis. As a consequence of the encephalitis, she developed epilepsy, lost years of short and long-term memories and has partial brain damage. But Faith is a fighter. She wants to make a difference, tell her story and raise funds for epilepsy research. For the second year in a row, Faith has planned and implemented her Fly for Faith fundraiser in Boca Raton, FL. She worked tirelessly to make the event a success. Fly for Faith, which sold out and raised $11,000 this year, was held at an indoor cycling facility. Participants burned calories and enjoyed food and drinks—all while raising funds for CURE. Faith has already started planning an even bigger and better event next year!

White House Correspondents Brunch
House Leader Eric Cantor (R-Virginia) presented the award to Pat, who was accompanied by his amazing wife, Patty.

White House Correspondents' Brunch
This past April marked the 20th Anniversary Annual White House Correspondents' Brunch. CURE was honored to present longtime friend Captain Patrick Horan with the CURE Heroes Award before the many assembled, including government officials, press and Hollywood celebrities.

Pat suffered a head injury in Iraq in 2007 and developed epilepsy as a consequence. He and his wife Patty were the ultimate portrait of courage, sharing their story about how they're helping raise awareness about epilepsy within the military community to the hundreds gathered at the Brunch. It was empowering, inspiring, and appropriate to present Pat with the CURE Heroes Award.

Patty Horan remarked to the crowd, "Epilepsy is a silent epidemic in the military community right now. CURE is an excellent organization and we hope that with their help we can break down the barriers to stop this devastating disease."

National WalkCURE team members included Scott, Angela, Team Captain Alison, Brian, CURE Research Manager Tracy Dixon-Salazar, PhD, Caitlin, Katherine and Mary.

National Walk For Epilepsy
On April 20, thousands descended upon Washington, DC to participate in the 7th Annual National Walk for Epilepsy. The CURE team was in attendance, enthusiastic about raising awareness in the nation’s capital. Thank you to the Epilepsy Foundation for organizing the walk year after year, and to all of the sponsors for their support.

Upcoming Events
Check out these great upcoming events across the country!


Upcoming Event 9th Annual Drive for CURE GOLF OUTING
August 22, 2013
Wheaton, IL
Info: Event Details

Upcoming Event Taking Epilepsy Awareness to New Heights
August 22, 2013
Kilimanjaro National Park
Tanzania, Africa
Info: Event Details

Upcoming Event 2013 Christopher Donalty CURE Benefit
September 7, 2013
Whitesboro, New York
Info: Event Details

Click here for more information on upcoming events

HERO Website

Have you seen our CURE gear?
Check out these bracelets designed by a wonderful friend of ours. 50% of the proceeds will benefit research in epilepsy.

 

CURE-Sponsored Conferences

May 3-5, 2013
Stanford University

An international gathering of researchers and their trainees gathered for the Issues in Clinical Electrophysiology meeting in Watsonville, CA. This intensive two-day meeting focused on effectively using data derived from patients with epilepsy to drive scientific research towards finding cures. Both young and established investigators discussed the potential of patient-centered research to transform lives of people with epilepsy. Participants, including CURE’s newest Research Manager Tracy Dixon-Salazar, PhD, also took time out to honor Dr. Philip Schwartzkroin, professor of neuroscience at UC-Davis, for his more than 30 years of devoted research in epilepsy.


May 2, 2013
George Washington University Symposium

CURE co-sponsored the George Washington Institute for Neuroscience Symposium, Cortical Development and Epilepsy: From Bench to Bedside. CURE Board Member Gardiner Lapham shared her personal story and a CURE video presentation, to help instill both a sense of urgency and meaning to this field of study.


May 1, 2013
Translational Neuroscience at Rutgers University

Julie Milder, PhD, CURE Research Manager, addressed the latest advances in translational epilepsy research as part of an upper level undergraduate neuroscience course at Rutgers University. She spoke about new trends in technologies that advance epilepsy research, as well as CURE’s role in continuing to provide vital support of epilepsy researchers.



Susan Axelrod and Francis Collins, MD, PhD, Director of NIH

April 16-19, 2013
NINDS Curing the Epilepsies 2013: Pathways Forward

In 2000, Hillary Rodham Clinton and the White House helped initiate the unprecedented, first-ever National Institutes of Health (NIH) conference on curing epilepsy. The goal – to set Epilepsy Research Benchmarks that would guide the research agenda for years to come. Now, thirteen years later, the NIH and National Institute of Neurological Disorders and Stroke (NINDS)-sponsored conference Curing the Epilepsies celebrated its third gathering.

For this year’s conference, the NIH and NINDS invited investigators and individuals interested in finding cures for the epilepsies to gather and discuss the progress that has been made in understanding the underlying mechanisms of the epilepsies, as well as the pathways toward cures. CURE grantees were highlighted at the meeting. There are many advances, but also many challenges, and the Benchmarks are revisited each year to address the new needs. Thank you to Former Secretary Clinton, the NIH, NINDS, and the many individuals and organizations whose collaborative efforts helped pioneer this conference and make it a highly anticipated meeting of minds in the search for a cure.

Prior to the conference, CURE hosted a reception to debut its 2013 State of Research in the Epilepsies Report, a report detailing both promising trends and major challenges in the arena of epilepsy research. To read the full report, visit www.cureepilepsy.org/soe


March 2013
Institute of Medicine (IOM) Meeting

The IOM hosted a meeting to discuss a new interactive web tool that will help patients and families be more proactive in their medical care. Addressing the need to improve and expand educational opportunities for people with epilepsy and their families, this screening tool will ask patients a series of questions about seizure types, frequency, and quality of life issues. Patients will be given responses based on their answers. The questions and answers will then be available for printout for the patient to take with him or her to their next doctor’s visit. The tool is in development stages and will be ready for private testing mid-June. For more on the IOM Report, visit www.iom.edu.


June 2012
Partners Against Mortality in Epilepsy (PAME) Conference

The motivating concept behind the PAME conference was to provide a forum for all stakeholders, including the bereaved and people living with epilepsy, to exchange information, learn from each other, and network so as to ultimately lead to the prevention of SUDEP. The conference structure included ten sessions on both basic and clinical science as well as education and advocacy around SUDEP. CURE Board Member Gardiner Lapham was instrumental in organizing this first-ever PAME conference, and served as co-chair with Jeffrey Buchhalter, MD, PhD. A complete summary of the conference can be found in Epilepsy Currents, Vol. 13. The next conference is planned for June 19-22, 2014 in Minneapolis, MN. Housing and Registration will open in January 2014.

What's Happening at CURE

Welcome Tracy!

CURE Welcomes Tracy, John, and Jill!
Tracy Dixon-Salazar, PhD, is the newest addition to CURE's Scientific Team. She joins Steve White, PhD, Senior Research Advisor and Julie Milder, PhD, Research Manager. Motivated by her daughter Savannah's uncontrollable epilepsy, Tracy earned her PhD in Neurobiology from the University of California, San Diego, and worked as a Post-Doctoral Fellow for 3 years doing research in Neurogenetics and Disease Modeling. As a staunch epilepsy advocate, Tracy has worked with numerous organizations, patients and family members to communicate the science of epilepsy research and the true hope it offers to patients.

John Boston has joined CURE as an administrative assistant. He has several years of experience as an administrative assistant in a variety of industries, but his heart is in the non-profit world. He is excited to be working at CURE with people who are passionate about making a positive difference in the world through raising awareness and funding for epilepsy research.

Jill Siar is spending her summer as an Office Intern at CURE. A 2013 graduate of DePaul University, she previously worked as an administrative assistant at The DuPage Community Clinic and a research assistant at University of Chicago Hospital. Having lost a childhood friend to epilepsy, she is particularly passionate about raising awareness about the disease as well as educating others about the importance of research.

Lindsey Naughton, previously the Development Coordinator at CURE, has left the organization to start a family. She will be greatly missed but we look forward to meeting her baby girl Avery, due this month. Former administrative assistant Kacie Cysewski has assumed her role as Development Coordinator.

In the News

BRAIN Initiative

Brain Initiative
On April 2, 2013, President Obama announced the launch of the BRAIN Initiative (Brain Research through Advancing Innovative Neurotechnologies), a project that will aim to help researchers find new ways to treat, cure, and even prevent brain disorders, such as epilepsy, Alzheimer's disease, and traumatic brain injury.

The National Institutes of Health, the Defense Advanced Research Projects Agency, and the National Science Foundation will support research beginning in FY 2014.

The initiative will build on technological innovations that have broken through in the last decade, and lead to greater ability to record brain cell signals in greater numbers and at a more accelerated pace.

"The human brain is at the present time the most complicated organ in the known universe," Dr. Francis Collins, Director of the NIH said. "We aim through this ambitious - some would call it audacious - project, to try to unravel those mysteries....and allow researchers to understand such complex diseases as epilepsy, autism, schizophrenia, Alzheimer's disease, traumatic brain injury that collectively affect 100 million Americans and cost us $500 billion each year in terms of healthcare costs."

The BRAIN Initiative has been compared to our last major research initiative, The Human Genome Project (HGP) which launched in 1988. An international, collaborative effort between the Department of Energy and the NIH, the HGP successfully mapped and sequenced all 20,500 genes of a human being. Thanks to the discoveries from the HGP, researchers today are armed with detailed information about the structure, organization and function of the complete set of human genes.
[More details on the BRAIN Initiative]

Rally for Medical Research
An estimated 10,000 researchers, patients, doctors, scientists, and advocates gathered in Washington, DC on April 8, to attend the Rally for Medical Research. The Rally was held at Carnegie Library in response to the 5% budget cut for the National Institutes of Health, resulting from sequestration and across the board spending cuts.

The grassroots movement was meant to serve as a reminder to Congress that the nation's health is dependent upon medical research and failing to adequately fund it would put innumerous lives in jeopardy.

The loss of federal dollars previously allocated for medical research profoundly impacts scientific breakthroughs that have the potential to transform and save lives; rally participants called on the nation's policymakers to make funding life-saving medical research a national priority.

HERO Website

HERO Website
Vision 20/20, a consortium of epilepsy organizations, has partnered to create the new HERO (Human Epilepsy Research Opportunities) website - www.epilepsyhero.org has officially launched!

The website highlights the importance of clinical research in epilepsy, acknowledging the "heroes" – or everyday people – who participate in clinical trials for epilepsy. HEROAccording to the site, the sole purpose of the HERO website is to make it easier for people to find and enroll in clinical studies and advance epilepsy research. It is critical to learn more about the basic mechanisms and causes of epilepsy so as to better match therapies to patients, and someday soon find targets for cures. The HERO website reminds us that humans are the key to progressive, innovative science, as clinical trials are the deciding factor in whether or not a treatment, device, or therapy is approved for use with patients.

Thanks to Dan Lowenstein, MD, who initiated development of the site, his wife Mylo Schaff, for acting as project manager, and CURE Research Manager Julie Milder, PhD, who played a major role in helping get the website off the ground. The HERO Initiative is an important reminder that studies in humans are essential to translating scientific discoveries into therapies that can truly impact patient care.

CURE Grantee’s Epilepsy Discovery Offers Hope

CURE grantee Ingrid Scheffer, PhD has recently discovered a gene associated with the most common form of epilepsy, which will accelerate diagnosis and treatment for many children. Dr. Scheffer was a 2012 CURE grant recipient for her research into a potential genetic basis for SUDEP and it is inspiring to see the breakthroughs emerging from her lab in Australia.

More on Dr. Scheffer’s discovery from the Sydney Morning Herald, April 2, 2013:

An Australian-led international research team has discovered a gene associated with the most common form of epilepsy, a discovery that will help with diagnosis and new treatments. Through genetic counseling, it will help people plan a family, lead researcher Professor Ingrid Scheffer of the University of Melbourne said.

Two percent of people have epilepsy and most do not know the cause of their condition. The research will help some of those with the most common form, focal epilepsy, discover the underlying cause.

Professor Scheffer said a gene test would help in cases where everything else in the brain looked normal. "It will give you a cause. That has important implications in terms of genetic counseling and managing the risk to your own offspring." She said a small proportion of people with the gene also had psychiatric or autism-spectrum disorders.

"Therefore genetic counseling is even more important. Knowing the gene means people can go forward and get pregnant and have proper medical assistance to ensure their baby does not have the disorder."

Professor Scheffer said 90 families took part in the study, which was conducted in partnership with Associate Professor Leanne Dibbens of the University of South Australia. Scientists in Europe and Canada also worked on the research, which is published in the journal Nature Genetics.

HHMI-CURE Medical Fellows Announced
As announced earlier this year, CURE has partnered with the Howard Hughes Medical Institute’s (HHMI) Medical Research Fellows Program to provide support for up to three medical students to conduct mentored research on epilepsy.

CURE is pleased to announce that two students have been chosen as HHMI-CURE Medical Fellows:

Abhijeet Gummadavelli is a third year medical student at Yale School of Medicine and will be working in the lab of Hal Blumenfeld, MD, PhD. He will study neurostimulation as a means of preventing impaired consciousness in epilepsy.

Ethan Ludmir is a second year medical student at Duke University School of Medicine and will be working in the lab of James McNamara, MD. Building on the previous work from Dr. McNamara’s lab, Ludmir will be studying the role of TrkB inhibition in neuronal chloride homeostasis and the development of temporal lobe epilepsy.

CURE and HHMI look forward to exciting results from these talented students and will continue to provide updates as their work commences.