CURE eUpdate Newsletter:
CURE
CURE Epilepsy
CURE eNews

Letter from CUREDear Friends of CURE,

This year marks the celebration of our greatest investment to date in cutting-edge epilepsy research. As 2013 draws to a close, it is time to reflect on this accomplishment, as well as the challenges and opportunities that await us in 2014 and beyond.

It's truly an honor for me to have passed the Chairmanship of CURE to my good friend and partner in this battle, Gardiner Lapham. I am so grateful to her for accepting her new role at CURE so gracefully and graciously. Gardiner's energy, expertise and personal commitment to this cause know no bounds. Her leadership will take us to new and exciting places, as we continue to do all we can to advance the science and move us closer to cures for all who struggle with epilepsy.

On a personal note, I am thrilled to be able to spend more of my time now delving back into the research, and all the possibilities that await us there. In these pages, you’ll read about CURE’s latest round of research awards. In addition, the conferences and workshops we support, the ongoing Infantile Spasms Research Initiative, and partnerships like the one initiated this year with the Howard Hughes Medical Institute, make this a landmark year for CURE and for epilepsy research.

Much of this is possible because of our own internal scientific team, under the leadership of Steve White, PhD, our Chief Scientific Officer. This team, which includes Julie Milder, PhD and Tracy Dixon-Salazar, PhD, works diligently to ensure that we invest wisely and strategically. And they enhance our ability to measure the impact of each of our grants, and our program as a whole, in moving the field forward in critical ways.

And of course, none of this would be possible without you – our friends and supporters. We are only able to carry the banner of being the largest private funder of epilepsy research because of your trust and your confidence in us as responsible and diligent custodians of your donations. We are truly honored by your commitment to CURE, and look forward to continuing to work together on this critically important mission.

Susan Axelrod
Susan Axelrod
Founding Chair

Your Dollars at Work

CURE Awards $2.6 Million to Grantees for Research in the Epilepsies
Citizens United for Research in Epilepsy (CURE), the leading nongovernmental funder of epilepsy research, is proud to announce the most recent recipients of research grants awarded this year. Over $2 million was awarded in this cycle, bringing the total for 2013 to $2.6 million and counting.

We are indebted to all of our supporters throughout the year who enable us to invest in these worthy projects. Awards designated with an (*), below, are funded solely by individuals, families, foundations or corporations.

CHALLENGE AWARDS:

Multi-year grants up to $250,000 for investigators exploring cutting-edge approaches to curing the epilepsies.

grantees *JULIE'S HOPE AWARD
John Huguenard, PhD and
Jeanne Paz, PhD

(Stanford University)

"Closed-loop control of injury-induced and genetic seizures using temporally precise cell-type-specific optogenetic manipulation"


grantees Janice Naegele, PhD
(Wesleyan University)

"GABAergic Interneuron Transplantation for Circuit Repair and Seizure Suppression in Temporal Lobe Epilepsy"


PREVENTION OF ACQUIRED EPILEPSIES (POAE) AWARDS:

Multi-year grants up to $250,000 in support of research into the prevention and treatment of epilepsies that occur after insult to the brain such as traumatic brain injury, stroke, and tumor viral infections.

grantees *BRIGHTER FUTURE AWARD
Detlev Boison, PhD
(Legacy Emanuel Hospital and Health Center)
"Prevention of Acquired Epilepsy Through an Epigenetic Intervention"


grantees Amy Brooks-Kayal, MD
(University of Colorado Denver)

Shelley Russek, PhD

(Boston University School of Medicine)
"Development of Novel JAK/STAT Inhibitors for Disease Modification in Epilepsy"


grantees Raimondo D'Ambrosio, PhD
(University of Washington)
"Prevention of Posttraumatic Epilepsy with FDA-Approved Anti-Inflammatory Drugs"


SUDEP (Sudden Unexpected Death in Epilepsy) AWARDS:

One-year grants up to $100,000 in support of innovative research that will enhance our understanding and ability to prevent SUDEP.

grantees *2013 CHRISTOPHER DONALTY AND KYLE COGGINS MEMORIAL AWARD
Gordon Buchanan, MD, PhD
(Yale University)
"Role of Vigilance State and Circadian Phase in Seizure-Related Death"


grantees *TEAM S4 AWARD
David Paterson, PhD
(Boston Children's Hospital)
"Searching for Common Gene Variants in Sudden Death in Childhood with Febrile Seizures, SIDS and SUDE"


grantees Else Tolner, PhD and
Arn van den Maagdenberg, PhD
(Leiden University Medical Center [LUMC] the Netherlands)
"Excessive Neuronal Inhibition Changes Physiological Functions and Increases SUDEP Risk"


PEDIATRIC EPILEPSIES AWARDS:

Multi-year grants up to $250,000 in support of research projects addressing the many syndromes that affect children.

grantees *THE ROCK THE BLOCK FOR PEDIATRIC EPILEPSY RESEARCH AWARD
Edward Cooper, MD, PhD
(Baylor College of Medicine)
"Targeted molecular therapy for KCNQ2-associated severe pediatric epilepsy"


grantees *THE VOGELSTEIN PEDIATRIC EPILEPSY AWARD
Timothy Simeone, PhD
(Creighton University)
"The Critical Role of PPARgamma in Ketogenic Diet Efficacy"

Annals of Neurology Publishes 2012 CURE Grantee's Paper
The September issue of Annals of Neurology published an important paper by Vanderbilt University investigator and CURE Grantee Jingqiong (Katty) Kang. Dr. Kang's work focuses on Dravet Syndrome, a form of infantile epilepsy that can be caused by genetic changes in the gene that codes for a major inhibitory receptor in the brain (GABRG2). Dr. Kang’s work shows that changes in this gene can lead to the broad range of severity of epilepsy observed in children with Dravet Syndrome. For example, children with a truncating mutation early in the sequence of this gene, have more severe seizures than patients who have a truncating mutation later in the gene sequence. This work explains how patients with defects in the same gene might have very different types of epilepsy, and lays the foundation for future work aimed at stopping seizures in these patients.

2012 CURE Grantee's Research Featured in Proceedings of the National Academy of Sciences (PNAS)
CURE Grantee Dr. Philip Haydon recently had a paper published in Proceedings of the National Academy of Sciences, in which he and colleagues revealed research identifying glial cells as playing a significant role in epilepsy. There are two major types of cells in the brain--neurons, which send electrical signals, and glia, which provide support to neurons. Glia can release chemical messengers that affect neuronal function. This work shows that stopping release of some of these messengers from glia not only reduced epilepsy in laboratory animals, but also reduced behavioral deficits and brain damage caused by seizures. One protein on neurons that is key to modulating epilepsy in this model is identified in this work, and could serve as a potential target for future studies into preventing epilepsy.
[Read the full study here]

CURE Community

Friends of CURE host fundraisers and events to raise awareness and funds in support of our mission year-round. Their support plays a key role in CURE’s successes, enabling us to fund the most cutting-edge research that will find a cure for the epilepsies. We are truly grateful for these supporters’ tireless efforts, determined spirit and loyalty.

The following events that have raised more than $50,000.

San Francisco

CURE 3rd Annual San Francisco Event
May 2013

Board member Evelyn Nussenbaum chaired a reception at the home of Nicola Miner and Robert Mailer Anderson in San Francisco. CURE supporters, old and new, attended to hear from Bay Area CURE researchers and advisors, support vital research and to take in the beautiful scenery. Thanks to Dan Lowenstein, PhD for his presentation on the promise of research and how CURE has been instrumental in moving the field forward.

Thanks to Evelyn, her team, and all the friends and supporters who joined us for another fabulous occasion in San Francisco.

Chicago

CURE 15th Annual Chicago Benefit
June 2013

More than 1,000 guests joined CURE founder and Chair Susan Axelrod and David Axelrod to support cutting-edge epilepsy research at the 15th Annual Chicago Benefit.

Former Secretary of State Hillary Rodham Clinton gave an impassioned speech detailing her personal involvement with the cause, and recalling the first CURE dinner in 1999, where she was the keynote speaker. She implored guests to raise their voices on behalf of the cause.

“All along the way CURE was at the forefront,” remarked Mrs. Clinton to a sold-out crowd. “We are now at a point, because of the mapping of the human genome - and because of breakthroughs in brain research - that for the first time we can really begin to unravel the mystery of epilepsy.” Attendees erupted in applause followed by a standing ovation.

This year’s benefit was the most successful in CURE’s history, raising nearly $1.5 million. Proceeds benefit research toward this critically underfunded disease. Thanks to everyone who attended and helped support CURE! Save the date for next year: May 19, 2014!

For more from the evening:

S4 Recap

Second Annual S4 Recap
Southbury, CT

More than 700 participants attended this year’s Second Annual S4 Epilepsy Walk. Friends and supporters enjoyed a baseball drop, dinner and silent auction of amazing Major League Baseball® packages and items. S4 stands for Sarah and Southbury Strikeout Seizures; Monica and David Fradkin and their family hosts the Walk in honor of their 12-year-old daughter, Sarah, who has epilepsy. This year, the event raised over $100,000! Their incredible fundraising efforts led to the naming of a grant. CURE awarded David Paterson with the Team S4 Award in the first cycle of 2013 grants. Thanks to everyone for supporting the Fradkins and the S4 Epilepsy Walk! Save the date for next year: June 7, 2014!

Hope4SUDEP

Hope4SUDEP
Chicago, IL

Longtime Friend of CURE Ellen Benninghoven hosted a One of a Kind Weekend sale featuring donated jewelry, art, vintage clothing and accessories. The items were generously donated, then sold at a Chicago storefront where the proceeds benefited CURE. Thanks to Ellen for hosting this special weekend and for her continued dedication to CURE!

Drive For CURE

Drive for CURE
Wheaton, IL

This year’s 9th Annual Drive for CURE was held at Cantigny Country Club in Wheaton, IL. More than 100 people gathered to golf, play games, try their luck at a raffle and bid on items and experiences in a live auction. Friends and supporters drove in from across the state and, despite a rainy start, everyone remained in good spirits. Hosts Susan and Jim Schneider, who have now raised more than $750,000 over the years, have named "Julie’s Hope Award" in honor of their daughter Julie, who has epilepsy. Their tireless enthusiasm, passion and energy are inspiring to all.

Donalty Benefit

The Christopher Donalty Benefit for CURE
Utica, NY

More than 600 supporters gathered at Hart’s Hill Inn in Utica, New York for the 6th Christopher Donalty CURE Benefit. Hosted biannually by former CURE board member Jeanne Donalty and her family, the event honors the memory of Jeanne’s son Christopher who died in 2002 at the age of 21 – from Sudden Unexpected Death in Epilepsy (SUDEP). Chris was a senior in college. The theme of this year’s event was “You Are The Cure”–an apt tribute to the overwhelming generosity of the 600 supporters who gathered Saturday night.

The community has raised more than $1.1 million since 2003, and this year’s fundraising efforts generated an astonishing $250,000 for research in epilepsy. A heartfelt thank you to the Donalty family, Mike and Kelly Parsons who chaired this year’s event, the Dinner Committee, and all of the guests and sponsors. Their commitment to this cause is critical to advancing epilepsy research.

 

CURE-Sponsored Conferences

CURE is dedicated to engaging the research community, promoting collaboration and increasing epilepsy’s visibility with the goal of finding a cure. Sponsored conferences have funded two major priority areas: 1) facilitate in person meetings to advance scientific dialog and 2) advance opportunities for young investigators to be included in the dialog. If you would like to apply for conference funding or have information on a conference CURE might be interested in supporting, please contact Julie Milder, PhD at julie@cureepilepsy.org.

Workshop on Neurobiology of Epilepsy XII (WONOEP)
Sixty epilepsy researchers, representing 11 countries, gathered in the Laurentian Mountains outside of Montreal for the twelfth meeting of the Workshop on Neurobiology of Epilepsy. The theme of the workshop was new technologies to study epilepsy and the workshop was subdivided into four sessions: Optogenetics and Stem Cells, Genetics, Imaging and New Methods in Neurophysiology. The program included four current CURE grantees, as well as four former grantees and one SAB member.

As a co-sponsor of this workshop, CURE was involved in promoting the inclusion of young investigators. Almost one quarter of the speakers were postdocs or young faculty, and, for them, presenting before their esteemed colleagues was an unprecedented and exciting opportunity.


Nov 18-19, 2013
Isaiah Stone Pediatric Epilepsy Lecture Series

The 2nd Annual Isaiah Stone Pediatric Epilepsy Lecture Series (ISPELS), will be held in Oklahoma City on November 18th and 19th. This event is chaired by CURE Board Member, Renzi Stone and his wife, Lee Anne. The Stone's founded ISPELS in 2012 through the Children's Hospital Foundation of Oklahoma. This year's special guests are Dr. James Wheless, Medical Director, the Neuroscience Institute and LeBonheur Comprehensive Epilepsy Program as well as CURE founder, Susan Axelrod. The Lecture Series is just one of the ways the Stones continue to raise awareness for epilepsy.


CURE the Epilepsies: Frontiers in Research...a New Seminar Series
Research seminars and medical Grand Rounds take place weekly at universities and institutions across the country but epilepsy research has always been significantly underrepresented. To address this deficiency, CURE has begun a new Seminar Series, CURE the Epilepsies: Frontiers in Research. Approximately 10 seminars will be held at different institutions each academic year with one goal – to present cutting-edge epilepsy research to a wide audience of clinicians, medical students, young investigators, and basic science researchers. The goal is to attract the best and brightest minds to this field of study.


April 16-19, 2013
Neurology Publishes Manuscript from Priorities in Pediatric Epilepsy Research: Improving Children’s Futures Today Conference

(CURE) co-funded the workshop "Priorities in Pediatric Epilepsy Research: Improving Children's Futures Today" with the Foundation of Ann and Robert H. Lurie Children's Hospital of Chicago.

The workshop focused on infants and toddlers with epilepsy, and involved stakeholders including pediatric epilepsy care providers, educators, clinical researchers, and, most importantly, parents of children with epilepsy. Four themes emerged from the workshop discussions: patient outcomes, diagnosis, role of parents and resources outside the medical system; all with an emphasis on early onset epilepsy for children three and under.

"As the mother of a daughter who developed epilepsy during this vital time in her development, I know how critically important control of early life seizures is," said Susan Axelrod, CURE's Founding Chair. "I was personally proud of CURE's support and involvement with this workshop because we must pull together all available resources to prevent the lifelong and serious effects epilepsy so often has on children. Workshops like this give these children the best shot at a normal, healthy life."

A manuscript from this workshop was published in the August 21, 2013 issue of Neurology. To read it, click here


May 2013
NINDS Releases Report from 2012 Epilepsy and Autism Workshop

While the association between epilepsy and autism has been acknowledged, medical professionals still struggle to understand the interrelatedness of the two diseases. In May 2012, leaders in the fields of epilepsy and autism came together for the first time when CURE and Autism Speaks united at a National Institutes of Neurological Disorders and Stroke (NINDS) workshop and discussed how to work collaboratively to combat these devastating disorders. The 2-day conference was sponsored by NINDS and supported by CURE and Autism Speaks. NINDS has released a report summarizing the discussions that took place among the dozens of researchers and clinicians gathered. Topics addressed include epidemiology, genetics, environmental factors, common mechanisms, neuroimaging, neuropathology, neurophysiology, treatment, and research gaps and challenges in the population of individuals with both autism spectrum disorder and epilepsy. Moving forward, the hope is that a collaborative effort between all invested partners will lead to a greater understanding and ultimately new treatments and cures for these two devastating disease.


September 2013
The National Institute of Neurological Disorders and Stroke (NINDS) Nonprofit Forum 2013

The seventh NINDS Nonprofit Forum, held in Washington, D.C. in September, featured plenary talks, open discussion with NINDS program directors, and an independent session specifically for nonprofit organizations. Topics discussed this year included the BRAIN Initiative, part of a new Presidential focus aimed at revolutionizing our understanding of the human brain, a description of the FDA’s patient-focused drug development program; and what it’s like to be a member of the NINDS Council. The Forum was a great opportunity for nonprofit leaders to network with colleagues and to expand on discussions with NINDS staff.

What's Happening at CURE

CURE's New Home

CURE's New Home
CURE has moved offices and now resides at 430 West Erie St. This open loft space provides a perfect setting for CURE's growing staff. Here, our focus on collaboration is highlighted, while giving ample space to work towards a CURE. Stop by for a tour!

CURE Elects New Chair, Four New Members to its Board of Directors
CURE has elected four new members to its Board of Directors as well as a new Chair. Succeeding Founding Chair Susan Axelrod will be Gardiner Lapham, who joined the CURE Board four years ago. We are thrilled to welcome these individuals to the organization and eager to work together as we continue our search for cures for the epilepsies.

Founding Chair Susan Axelrod will continue to play an integral role in the organization providing the thoughtful input and guidance that has steered CURE for more than 15 years. Susan will remain on the Board, and Chair the CURE Research Committee.

CURE also extends the deepest gratitude to those Board members whose terms are expiring: Jeanne Donalty, Barb Kelly and Randy Siegel. Their contributions over the years have proven invaluable and their plans to stay involved with CURE in different capacities is much appreciated.

Carol FulpCarol Fulp is President and CEO of The Partnership, Inc., New England’s premier organization dedicated to enhancing the competitiveness of the region by attracting, training, retaining and convening professionals of color. During its 25 year history, The Partnership has consulted with 250 corporations and nearly 3,000 professionals of color have participated in its innovative leadership development programming.

Given her leadership in business and public service, President Obama appointed Fulp as a Representative of the United States of America to the Sixty-fifth Session of the United Nations General Assembly. Boston Business Journal listed Fulp as one of the “50 Most Influential Bostonians” and Boston Magazine listed her as one of the “50 Most Powerful Women in Boston.” Fulp is a graduate of the University of the State of New York.

Paul HeldmanPaul Heldman is Executive Vice President, Secretary and General Counsel for The Kroger Co., where he is responsible for the Company’s legal and labor relations affairs. Paul joined Kroger in 1982 as an associate in the Law Department.

Paul and his wife, Deborah Kirshner, reside in Cincinnati and have three children: Liana, Alex and Madeleline. Alex developed severe epilepsy as a result of viral encephalitis at the age of 19 in 2005, and his battle with both seizures and with the debilitating effects of medications has led Paul and Debbie to join the fight for a cure.

Paul holds a B.S. from Boston University and a J.D. from the University of Cincinnati.

Joel MarcusJoel Marcus co-founded Alexandria Real Estate Equities, Inc. in 1994, Alexandria Venture Investments in 1996, and the annual Alexandria Summit in 2011. He has served as Chairman of the Board of Directors since May 2007, Chief Executive Officer since March 1997, President since February 2009, and a director since the Company’s inception in 1994.

He received his undergraduate and J.D. from the University of California, Los Angeles. Mr. Marcus serves on the boards of the Accelerator Corporation, of which he was one of the original architects and co-founders, Foundation for the National Institutes of Health (FNIH), Intra-Cellular Therapies, Inc., Multiple Myeloma Research Foundation (MMRF), and the Partnership for New York City. Mr. Marcus received the Ernst & Young 1999 Entrepreneur of the Year Award (Los Angeles – Real Estate).

C Renzi StoneC. Renzi Stone is chairman and CEO of Saxum in Oklahoma City, Okla. Saxum is one of America’s fastest-growing integrated marketing communications agencies. Stone has grown his business from a one-person start-up in 2003 to a team of professionals headquartered in Oklahoma City. His blogs on the future of marketing communications and America’s energy independence were recently featured in PR Week and on CNBC.com.

Renzi and his wife, Lee Anne, live in Oklahoma City with their sons, Jackson (6) and Walker (1). In 2010, the Stones lost their 11-month-old son, Isaiah, to epilepsy. The family established the Isaiah Stone Scholarship, a college scholarship fund for high school seniors awarded annually to a student with outstanding leadership and academic skills. They have also founded the Isaiah Stone Pediatric Epilepsy Lecture Series in 2012 through the Children’s Hospital Foundation of Oklahoma to fund a variety of research and epilepsy-related activities and education.

Welcome, David!
David Rubel joined CURE in September of 2013 as Controller. David brings more than 30 years of accounting and finance experience from various industries including investment banking and real estate. Originally from New York City, David has lived and worked all over the world and comes to CURE - and Chicago - from Sydney, Australia.

Introducing: CURE’s New Scientific Advisory Board (SAB)
The Scientific Advisory Board (SAB) is a visionary team that advises CURE on the state of epilepsy research, how CURE's research portfolio fits within it, and on the most promising future directions and initiatives that will drive the search for cures. CURE is immensely grateful to these individuals, who volunteer their time and expertise to help CURE achieve its mission.

Anne Anderson, MD
Associate Professor
Baylor College of Medicine

Douglas Coulter, PhD
Professor of Pediatrics
University of Pennsylvania

Vicky Holets Whittemore, PhD
Program Director, Epilepsy
National Institute of Neurological Disorder & Stroke (NINDS)

Jong Rho, MD
Professor
University of Calgary

Harald Sontheimer, PhD
Professor
University of Alabama Birmingham

CURE Conversations
CURE is pleased to announce an exciting new section on our website: CURE Conversations! This new forum features interviews with our scientists and discusses the focus of their work as well as recent breakthroughs in the field of epilepsy research. These investigators are the people behind the scenes who work diligently in the labs to unravel the mysteries of epilepsy, studying the science that will one day lead to cures for the epilepsies. Is there someone you want to hear from? Email samantha@CUREepilepsy.org with requests.

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


Upcoming Event The Cupid Chase 5K Run
Feb 8, 2014
Senoia, GA

Upcoming Event CURE Annual Chicago Benefit
May 19, 2014
Special Guest James Taylor

Upcoming Event S4 Epilepsy Walk
June 7, 2014
Southbury, CT

Click here for more information on upcoming events

Grisolano Center

The Grisolano Center for Neurodevelopment (GCN) is a pediatric neuropsychology practice dedicated to helping children overcome challenges in learning and development to create a better life for them today and for the future. This November for Epilepsy Awareness Month, CURE is partnering with GCN on Facebook: for each new "Like" on their page, GCN will donate $2 to CURE! Log in to Facebook now and help raise money for research in epilepsy.