HOPE INNOVATION DISCOVERY QUARTER 3 2016 • EDITION 2, VOLUME 3
Transforming Lives, One Grant at a Time INSIDE:
The Incredible Story of the CURE Epilepsy Award in Honor of Felix Henry
Meet Our New Board Members
A New Way to Get Involved! CURE Events Map
The Meridian 5K Fun Run/Walk on July 23 raised more than $21,000 for epilepsy research! CURE will use the funds to support a grant named in memory of Vivian Lake Cotton, a beautiful little girl who lost her life due to complications from her epilepsy. Sincere thanks to the Cotton Family and Meridian Health Plan's support and partnership.
QUARTER 3 2016 THE LATEST FROM CURE An Update from the Chief Executive Officer A Letter from the Chair of the Board IN THE NEWS In Case You Missed It... CURE Responds to DEA’s Decision on Marijuana Scheduling ON THE ROAD TO FIND A CURE YOUR DOLLARS AT WORK The Incredible Story of the CURE Epilepsy Award in Honor of Felix Henry Taking Flight Award Recipients Land Faculty Positions RESEARCH SPOTLIGHT CURE Scientific Advisory and Lay Review Councils: Gifting CURE Throughout the Year Are You Enrolled in EGI and SeizureTracker®? COVER FEATURE How CURE-Funded Research Impacts Patients' Lives IN THE COMMUNITY Day of Science Comes to Washington, D.C. and Disneyland GET INVOLVED CURE Crew Events A New Way to Get Involved! CURE Events Map
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FROM THE CHIEF EXECUTIVE OFFICER
Research that impacts people with epilepsy is at the center of CURE, embedded in our mission as we challenge the best and the brightest to cure epilepsy. Whether they are young investigators, established researchers or distinguished institutions, all are united through CURE bringing hope, innovation and discovery to our families.
initiative sent an official Request for Applications (RFA) in June and the program is now at the point where the inaugural grants will be selected in December 2016. We are confident that this multi-center, multi-investigator research team will rapidly build a body of knowledge and ultimately translate patient-relevant findings into novel therapies and help so many affected by PTE.
Our team science approach to research, an example of CURE’s role in driving collaboration and uniting researchers, continues to develop in our newest programs. It was almost a year ago on the eve of Veterans Day that we announced an unprecedented, multidisciplinary program as a result of a grant from the Department of Defense (DOD) devoting significant resources over five years toward research that would benefit veterans and civilians alike who have been touched by traumatic brain injury (TBI) and resulting post traumatic epilepsy (PTE). Beginning with a multidisciplinary think tank and the establishment of an External Advisory Council (EAC) of experts to provide scientific and logistical oversight, the
Bringing experts together to challenge the status quo allows CURE to remain at the cutting edge and drive new directions and focus in epilepsy research. Findings from April’s SUDEP action tank meeting showed a need to focus on understanding the linkage between sleep and epilepsy. SUDEP frequently occurs during sleep, and there are many unknowns surrounding it. A result of that meeting is the introduction of the new Sleep and Epilepsy award. This new award seeks to accelerate promising research into the molecular-, cellular-, and systems-level mechanisms that underlie the relationship between sleep and epilepsy. In keeping with our commitment to foster collaboration, the award will take on a multidisciplinary, collaborative approach where the researcher must collaborate with at least one investigator with expertise from fields outside of
FROM THE CHAIR OF THE BOARD
The force that propels all our efforts to advance a cure is people, and among the many responsible for CURE’s progress, volunteers are a particularly special group at the heart of CURE. We convey our genuine appreciation for all the inspiring work volunteers continually do to involve more and more people in our mission. The CURE Board of Directors is another special group who join us from an array of backgrounds and are critical to our overall success. I would like to recognize outgoing board members who provided valuable leadership and service to our constituents for six years. These individuals have been instrumental in driving CURE’s strategic vision, leading our research program and elevating public awareness of both epilepsy and the Organization.
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Gardiner Lapham, Immediate Past Board Chair, is a tough act to follow! I took cues from her work as Board Chair, and I can say there has not been an area within CURE she has not touched. Another outgoing member is Greg Lewis—truly one of the most talented individuals, eloquent speakers and strategic thinkers I have ever had the pleasure to meet. One of his excellent contributions to CURE was the strategic plan that illuminated the path to advancing the field of epilepsy research. And on top of that, he simply is a wonderful person. Lastly but certainly not least, Connie Milstein is a force of nature. From hosting 60 Minutes viewing parties and connecting CURE with influencers like Vice President Joe Biden to underwriting events so every penny could be
epilepsy, like sleep physiology or genetics. We are so grateful to the BAND Foundation for their generous support that made this award possible. We find significant value in placing science right within reach of our families affected by epilepsy. Our community outreach initiatives continue to grow, with the recent Day of Science events in Washington, DC and at Disneyland. At the National Geographic Museum in our nation’s capital, guests were treated to a first-hand look at cutting-edge science and the opportunity to interact with those directly involved with researching cures for the epilepsies. Our journey continued to Day of Science at Disneyland on November 2, where we announced the winners of the first-ever Educational Enrichment Fund scholarships, sponsored by Lundbeck. Inspired by CURE’s own Dr. Tracy Dixon-Salazar, this fund aims to help patients and caregivers further their educational goals. We are grateful to Mike Milken, chairman of the Milken Institute, for his transformational leadership and for bringing much-needed attention to epilepsy as a focus area for donors. An innovator in medical research and public health who has helped advance epilepsy studies for
allocated to research, she has been one of the most consequential people behind our philanthropic efforts. On behalf of the entire CURE Family, I would like to impart sincere gratitude and admiration for the unrelenting dedication of our outgoing board members. We are extremely fortunate to have a distinguished group of individuals join us as the inaugural members of the newly launched Leadership Advisory Council (LAC). Comprised of extraordinary leaders from across the country who are esteemed members of the scientific, business, political, and philanthropic communities, they will assist us in building upon CURE’s strategic vision and research programs in the future.
more than 40 years, Milken recognizes that the most catastrophic forms of epilepsy occur in very young children and can have a lifelong negative impact on patients, families, and communities. The Epilepsy Giving Smarter Guide has the express purpose of empowering patients, supporters, and stakeholders to make informed, strategic decisions when directing their philanthropic investments and energy into research and development efforts. A special thanks goes to the Institute for acknowledging CURE’s utilization of over 90% of our resources toward our research mission. Our CURE-funded programs continuously evolve to meet the needs of science as we push the envelope to faster cures. Because of special events, individuals, corporations, and foundations, we are able to advance our mission and make this all happen. Thank you for helping to make this possible. As we move closer to year’s end, we hope you consider making a donation to help us discover this elusive cure for epilepsy.
Robin Harding Chief Executive Officer, CURE
Our incoming board members: Scott Copeland, Celia Huber and Stacey Pigott, are longtime friends of CURE who have committed to serving our constituents and the greater epilepsy community by joining our Board. We could not be more pleased to have Scott, Celia and Stacey join us in our shared journey on the road to find a cure.
Sh Sharon O’K O’Keefe f Chair, CURE Board of Directors President, The University of Chicago Medicine
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Welcome Our New Board Members! We are proud to welcome three new Board Members who will work alongside us to drive our mission. M. Scott Copeland is the Principal of RST Development, a family-owned and operated, multi-family management and construction firm. Scott and his wife, Jillian, have four sons and reside in Rockville, Maryland. Nicolas, their third son, was diagnosed with epilepsy at eight months old. Nicolas’ unique life has been the foundation of the Copeland family's motivation to make a difference; their efforts including the formation of the Diener School for students with learning differences and creating employment, housing and socialization opportunities for adults with special needs. Introducing new organizations to CURE and inspiring them to join our mission, Scott has been a long-time supporter of epilepsy research.
Introducing the... CURE LEADERSHIP ADVISORY COUNCIL Susan Axelrod Co-chair Founding Chair, CURE Howard Koh, MD Co-chair Harvey V. Fineberg Professor of the Practice of Public Health Leadership, Harvard T.H. Chan School of Public Health and the Harvard Kennedy School Peter Flaherty, JD Managing Director, Arcon Partners
Celia Pohani Huber is a Senior Partner in McKinsey & Company’s North American Healthcare practice and a leader at the intersection of strategic direction and healthcare. In her 20 years with McKinsey she has worked with nonprofit and public health insurers; benefits administrators; healthcare providers; and state-level entities; managing a broad range of client relationships. Outside of work Celia is passionate about children and community service, and has led partnerships with public school systems for grants and teacher effectiveness. Celia and her husband Daniel live in Los Alto Hills, California, and have two children. She was instrumental in leading CURE’s 2009 Strategic Plan, and has been a long-time supporter of the Organization's mission.
Stacey Hyland Pigott has volunteered at CURE for over ten years in many capacities; she has served on a variety of committees and is currently a member of the Research Committee. She represented CURE as a consumer reviewer for the DoD, and co-founded "Rock the Block for Pediatric Epilepsy Research" with former CURE Board Member Kathy Dodd—successfully hosting fundraisers and sponsoring five CURE Pediatric Epilepsy Awards. Stacey's passion for advocating epilepsy research and educational intervention for children with epilepsy is inspired by her son who was diagnosed with Electrical Status Epilepticus during Sleep (ESES) at four years old. Stacey and her husband, John, live in the Chicago suburbs with their three children Evan, Henry, and Ava.
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Rick Jasculca Chairman and CEO, Jasculca Terman Strategic Communications Story Landis, PhD Former Director, National Institute of Neurological Disorders and Stroke (NINDS) Gardiner Lapham Immediate Past Chair, CURE Greg Lewis Retired Partner and Management Consultant, McKinsey & Company Constance Milstein Principal and Co-Founder, Ogden CAP Properties LLC John Vogelstein Chairman New Providence Asset Management; Special Limited Partner Warburg Pincus LLC
IN THE NEWS
In Case You Missed It... Here are some recent news items related to epilepsy that may be of interest to you.
Randy Siegel, a former CURE Board Member and dear friend of the CURE Family, had an article published in July by The Washington Post about his daughter's struggle with epilepsy. Inspired by Pharrell Williams's song "Happy," Randy has decided that instead of counting her seizures he will count her smiles, her laughs, and her hugs. Read more at the Washington Post website.
Congratulations to our founder, Susan Axelrod on her Daily Point of Light Award in August for championing a cause that so desperately needs a voice. The Daily Point of Light Award celebrates the power of the individual to spark change and improve the world. Congratulations to Susan for being recognized as a bastion of epilepsy research! Read more at the Points of Light website.
GW Pharmaceutical’s Epidiolex®, a pharmaceutical-grade form of CBD, is proving effective in reducing the number of seizures experienced by those with Lennox Gastaut Syndrome (LGS). Those receiving Epidiolex in a study saw seizures reduce 44%, compared to a 22% reduction for those in the placebo group. Read more at the Forbes website.
Patients with treamentresistant epilepsy face a life of uncontrollable seizures, and are 20x more likely to experience mortality. The Milken Institute Center for Strategic Philanthropy released its "Epilepsy Giving Smarter Guide" to inform strategic philanthropic investments. Read the report online.
Advocacy Spotlight CURE Responds to DEA’s Decision on Marijuana Scheduling The Drug Enforcement Administration (DEA) announced in August its decision to maintain marijuana as a Schedule I drug, despite petitions from CURE and many patient-focused organizations concerned with federal barriers prohibiting researchers from understanding the medical potential of cannabidiol (CBD) and many other non-psychoactive cannabinoids found in marijuana. Despite this setback, CURE is pleased with the DEA’s decision to increase DEA-registered marijuana manufacturers so more researchers can investigate. Read more here.
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ON THE ROAD
On the Road to Find a CURE A look back at our team’s recent travels in the epilepsy community Core principles of CURE’s research strategy include staying up-to-date on the latest scientific research, keeping a finger on the pulse of the field, engaging the greater epilepsy community and informing the public about CURE’s activity in the space. “On the Road to Find a CURE” summarizes our team’s visits to laboratories, scientific meetings and conferences throughout the world as part of this strategy. In recent travels, CEO Robin Harding, Associate Research Directors Tracy Dixon-Salazar, PhD and Julie Milder, PhD, and EGI Administrator Brandon Laughlin went on the road stateside and internationally to participate in a number of scientific meetings in the field, representing CURE at the Partners Against Mortality in Epilepsy (PAME) Conference in Alexandria, VA; the inaugural FamilieSCN2a Conference in Chicago, IL; and the Gordon Research Conference and Seminar in Girona, ES.
ALEXANDRIA, VIRGINIA PAME SCIENTIFIC CONFERENCE
Gardiner Lapham co-hosting the 2016 PAME Scientific Conference
2016 PAME Scientific Conference
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With the goal of increasing understanding of mortality in epilepsy, including the devastation of Sudden Unexpected Death in Epilepsy (SUDEP), the Partners Against Mortality in Epilepsy (PAME) Conference convenes clinicians, researchers, public health officials, people touched by epilepsy, and their families and caregivers for knowledge-sharing in a multidisciplinary discussion. In its third installment, the bi-annual conference disseminates information underscoring the need to accelerate research into epilepsy-related mortality and SUDEP prevention. The meeting is an important source for researchers to determine the direction of future projects, clinicians to identify gaps in care, institutions to increase awareness, and families who have lost loved ones to epilepsy to learn more. CURE has been instrumental in bringing SUDEP awareness to the forefront of the field and identifying potentially game-changing scientific research projects; helping establish leading causes and risk factors, and awarding $3.6M in SUDEP grants since 2002. Immediate Past Board Chair, Gardiner Lapham, co-chaired the PAME Conference for the third consecutive time alongside Jeffrey Buchhalter, MD, PhD. Tracy Dixon-Salazar, PhD, a member of the Planning Committee along with past CURE Board Member Jeanne Donalty, presented in several sessions; and Robin Harding and Brandon Laughlin engaged one-on-one with all the attendees and participants, spreading the word about CURE’s work and mission. The energy and participation at this year’s meeting was both heart-warming and humbling—the community of individuals and groups who are united by concern about the devastation of mortality in epilepsy has grown appreciably. CURE is proud to be a “visionary”-level sponsor and partner organization of the PAME conference.
CHICAGO, ILLINOIS FAMILIESC2NA CONFERENCE
Founding mothers of FamilieSCN2a
Rising to prominence in a short span of time, the SCN2a gene has gone from being the gene behind a rare epilepsy syndrome to being one of the more-researched and discussed genes associated with epilepsy. This year, the first-ever FamilieSCN2a Conference at Lurie Children's Hospital in collaboration with Northwestern University offered an opportunity for families affected by SCN2a to engage with similar families and learn about advances in treatment and the latest research in genetics.
EGI Administrator, Brandon Laughlin at the inaugural FamilieSCN2a conference
EGI Administrator Brandon Laughlin was on hand to promote CURE's mission and focus on epilepsy genetics as a Priority Area in our grant portfolio, namely the establishment and continuing growth of Epilepsy Genetics Initiative (EGI). Our mission to cure epilepsy starts with a better understanding of the underlying mechanisms of epilepsy, and research into genetics is a promising area in which CURE has invested and prioritized through the groundbreaking EGI. Once mostly unknown, the singular SCN2a gene mobilized physicians, researchers and families from around the word to attend the inaugural FamilieSCN2a Conference, raising more awareness of the gene and CURE’s commitment to research it.
The Gordon Research Seminar and Conference, “Mechanisms of Epilepsy and Neuronal Synchronization” saw senior researchers, emerging investigators, postdoctoral researchers and graduate students descend on Girona, Spain in August for the premier scientific meeting in epilepsy research. Hosted bi-annually, the notable Gordon Research Conference presents unpublished data, positioning the meeting at the cutting edge of the field. For the very first time, the Gordon Research Conference included a preceding Gordon Research Seminar, a focused meeting attended by 55 young investigators and a select cohort of senior investigators, where Associate Research Director, Julie Milder, PhD presented on a Careers and Funding Mentorship panel. Nearly half of the attendees at the Conference portion were young investigators—and in addition to being a partnering sponsor of both the Gordon Research Conference and Seminar—CURE was proud to fund travel awards for 14 graduate students and post-docs who otherwise may not have had the opportunity to attend. Known as an ideal place to cultivate relationships and collaboration opportunities between mentors and mentees, up-and-coming investigators flock to Gordon for both its scientific and professional value.
GIRONA, SPAIN GORDON RESEARCH CONFERENCE AND SEMINAR
CURE funded 14 travel awards for grad students and postdocs to attend the Gordon Research Conference
CURE Taking Flight awardees Omar Ahmed, PhD, (University of Michigan) and Laura Ewell, PhD (University of California, San Diego) were honored to co-chair the introductory Gordon Research Seminar. The CURE-sponsored meeting is a hub for a variety of basic and translational epilepsy research, but maintains a stimulating, non-intimidating community atmosphere. Researchers who participated recounted memorable experiences of gathering together and sharing stories with each other at meals and social outings between and after sessions. CURE’s research team was proud to participate and promote CURE’s funding opportunities and priority areas.
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YOUR DOLLARS AT WORK
The Incredible Story of the CURE Epilepsy Award in Honor of Felix Henry Why Mingshan Xue, PhD pursued a career investigating the devastation of epilepsy Epileptic encephalopathies are a group of devastating pediatric neurological disorders which are characterized by aggressive, frequent seizures that barrage the brain during development and cause cognitive and psychological deterioration. Progress has been made in identifying the genetic causes, but a limited understanding has impeded the development of new therapies.
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ingshan Xue, PhD of Baylor College of Medicine's Department of Neuroscience and Texas Children's Hospital’s Jan and Dan Duncan Neurological Research Institute/Cain Foundation Laboratories is devoted to researching epileptic encephalopathies, and was awarded the 2016 CURE Epilepsy Felix Henry Memorial Award, named in honor of Felix Henry, who started having seizures at three months old. After being hospitalized four months, tragically Felix lost his life to epilepsy at just seven months old. This $250,000 award will support transformative scientific advances—such as for Dr. Xue’s work on the project, “Novel Models of Epileptic Encephalopathies.” Felix Henry’s parents, Jen Scott and Pierre-Gilles Henry, PhD selected Dr. Xue’s work specifically to name in Felix’s honor.
Upon learning of the naming of his grant and Felix’s story, CURE arranged for Dr. Xue to reach out to Jen and Pierre-Gilles to thank them for their generous support.
“I feel that words are probably insufficient to express how grateful I am, especially after reading Felix’s story...”
Sharing his own touching story of why he chose epilepsy as his research focus, Dr. Xue explained that as a postdoctoral fellow he “had never worked on or even thought about working on epilepsy” until he met a young patient with Ohtahara syndrome in 2010. After he witnessed her have three seizure episodes during their first 30-minute meeting, he was soundly convinced to pursue a career studying the mechanisms of epilepsy. Later, her parents established a fund at Jan and Dan Duncan Neurological Research Institute through which Dr. Xue started a lab in 2014. The mouse model of epileptic encephalopathy his team is currently working on is the project CURE is supporting with the CURE Epilepsy Felix Henry Memorial Award. Sadly, the young patient who initially inspired Xue to study epilepsy passed away in March 2016. While she never uttered a word, she influenced the life course of an epilepsy researcher, and like Felix, continues to touch the lives of many others. Dr. Xue concluded his note to Felix’s parents, "Research sometimes can be frustrating, but these kids remind me why I am still working in the lab on Friday evenings. Of course, this is also why you and CURE are working so hard to support our research. Thank you!" CURE extends its heartfelt thanks to the Henry Family for its gift in honor of Felix.
i You can support grants for research projects too at the CURE website. 10
Felix's 5-month birthday was celebrated with his medical team present. Many gifts, and a chocolate cake; it was an emotional moment.
Taking Flight Award Recipients Land Faculty Positions All CURE's research awards seek to facilitate promising epilepsy research projects, but the Taking Flight Award is particularly special—its purpose is to promote the careers of young epilepsy investigators, allowing them to develop a research focus independent of their mentor(s). We recently caught up with two previous recipients—Gemma Carvill, PhD and Laura Ewell, PhD—to discuss their newly confirmed faculty positions and the role CURE played in their careers. Dr. Carvill received the award for her project “Epigenomic Approaches to Epilepsy” in 2015; Dr. Ewell for her project, “Pediatric epilepsies: microRNAs determine network excitability during development” in 2016. What was your first interaction with CURE like? Carvill: “Looking for new funding opportunities mostly through the CURE website, I first discovered the work CURE does and its mission back in 2011, fresh off the boat from South Africa. I remember thinking at my first reception, and ever since, that everyone was so enthusiastic about the research—it was motivating. I knew CURE was going to do great work to support research.”
Why did you decide to apply for a CURE grant? Ewell: “The more interactions I had with CURE, the more I wanted to be part of its mission. I wanted to build my own lab to further study epilepsy. CURE’s Taking Flight was perfect.”
What is your new role and institution? Ewell: “I first learned of CURE while I was a postdoc; I officially “met” CURE a few years later at the 2012 Gordon Research Conference. It was inspiring…I vividly remember the video they showed. CURE is such a personal organization—they bring real-life stories of epilepsy to us as researchers. CURE makes you feel it is possible to make a difference—they helped me realize that I am part of the community that is working to cure epilepsy, and it is OK to own it.”
How would you characterize CURE’s role in your career or projects? Carvill: “This career development award has been integral to the development of my independent research—it afforded me the freedom to develop the genetic model of a specific genetic epilepsy (CHD2) and to study the changes in gene expression. This new research direction and the preliminary data generated by the project provided the foundation for my research statement in seeking a tenure track faculty position.”
Ewell: “I’ve landed a dream job—Group Leader in Heinz Beck’s Laboratory at the University of Bonn in Germany. I am honored to have received the VW Foundation’s Freigeist Fellowship—a €1 million, 5-year award to start an independent group in Germany—and I am excited to combine critical analysis with imagination and innovative solutions in studying this disease. My lab will be focused on connecting cellular- and network level neuroscience to understand disease processes in epilepsy.” Carvill: “I’ll be Assistant Professor, Department of Neurology at Northwestern University Feinberg School of Medicine. My work will extend the independent studies I started with the support of the Taking Flight Award; specifically, I’ll be using a genetic model of epilepsy (CHD2 gene) to study the role of chromatin remodeling and epigenetics in epilepsy. I’m also interested in finding new genetic causes for pediatric epilepsies in the regions of DNA that encode proteins and those that don’t. I am excited to start working with fantastic clinical teams to identify patients in whom genetic testing will help end their diagnostic odyssey and inform treatment options.”
How would you describe CURE in one sentence? Ewell: “Big heart; unwavering belief that through research and working together we will cure epilepsy and make people’s lives better along the way.” Carvill: “CURE is unique because of the people that make it tick, this fantastic group of people drive the research community towards a cure for epilepsy.”
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proudly congratulates Drs. Carvill and Ewell for taking on new faculty roles at leading institutions, and is excited to watch their continuing growth and success.
Learn more about grant opportunities and past grant recipients at the CURE website.
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RESEARCH SPOTLIGHT
What is the CURE Lay Review Council? Keeping the patient at the heart of our research efforts CURE remains at the forefront of epilepsy research by selecting from an impressive pool of grant applicants each year, with many stakeholders involved in the awarding process. Keeping the patient at the heart of all the research we fund, the grant review process heavily relies on the dedicated members of our Lay Review Council (LRC). What is the LRC? The LRC is one of the most important aspects of CURE’s unique grant review process. It is made up of people with epilepsy and loved ones of people touched by epilepsy who have a special interest in finding a cure. LRC members read research proposals from a lay perspective, ensuring stakeholders’ point of view is represented at all stages of CURE’s grant review process. Who can be a Lay Reviewer? A background in neurology is not required to participate. Anyone interested in gaining a greater knowledge of epilepsy research and furthering CURE’s mission can apply to be an LRC member. What does a Lay Reviewer do? During the grant review process, each application is reviewed by one or more Lay Reviewers. Their feedback is shared via CURE’s web-based grant review tool, and once the grant is vetted and reaches full proposal stage they are invited to participate in a teleconference to review alongside the scientific reviewers assigned to the same grant category. Throughout the year, Lay Reviewers also provide general feedback on the grant review process and other relevant topics.
CURE LAY REVIEW COUNCIL (LRC) Veronika Archer – Washington, D.C. Blake Cunneen – Illinois Shalee Cunneen – Illinois Traci DeAngelis – New Jersey Yssa DeWoody – Texas Ann DiPetta – New York Debbie Kirshner - Ohio David Kovar – Illinois Elizabeth Kovar – Illinois Sibernie Morrison – New York Jennifer Murphy – North Carolina Kim Nye – California Stacey Pigott – Illinois Kristin Seaborg – Wisconsin Linda Sudlesky – Massachusetts
If you are interested in learning more about our Lay Review Council (LRC), visit the CURE website.
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Blake, Sean, Ella and Shalee Cunneen
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To my wife and I, the LRC was not only a way to get involved with a charity that had our uncompromising support, but also learn more about what’s coming next in the field. Unfortunately, our daughter has intractable epilepsy, so it’s helpful for us to see first-hand the fantastic gains being made in research. Experiencing the scrutiny that goes into every research dollar handed out first-hand reinforces our support.”
Blake Cunneen Member, Lay Review Council CURE Board of Directors
The CURE Scientific Advisory Council: Impacting Research Discoveries A visionary team at the core of our Organization Offering expert guidance on everything from the wording of our mission statement and multi-year strategic research plan to helping determine indicators of success within our grant portfolio and driving discussions about needs and opportunities in the field, the Scientific Advisory Council (SAC) is an invaluable group of experts that help CURE be a catalyst in the epilepsy space. Composed of scientists and physicians, all of whom are epilepsy research advocates, SAC members are key opinion leaders who provide critical advice and input as we seek cures for the epilepsies. Guidance from the SAC has assisted CURE in formulating, launching and growing our research-centric Signature Programs, targeting Priority Areas in epilepsy research, and collaborating with the best and brightest in the field in our robust investigator-initiated grants program. The SAC is a visionary team that holds a special place in the hearts of the CURE Family, and we are immensely grateful to SAC members for volunteering their time and expertise to help impact discoveries in research.
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CURE SCIENTIFIC ADVISORY COUNCIL (SAC) A Emery N. Brown, MD, PhD
Massachusetts Institute of Technology Harvard Medical School B Jaideep Kapur, MD, PhD
University of Virginia C James O. McNamara, MD
Duke University D Brenda Porter, MD, PhD
Stanford University E Vicky Holets Whittemore, PhD
National Institute of Neurological Disorders and Stroke (NINDS)
Are you Enrolled in EGI and Seizure TrackerÂŽ? Enroll in both databases in a simple registration process Now you can easily link up your EGI data with your Seizure Tracker data through a private number that only you know! With this new partnership, patients can enroll in both databases in a simple registration process, advancing research in two beneficial initiatives at once. Through this linkage, researchers who are granted access to both data sets will be able to do much more detailed research than with the data from EGI or Seizure Tracker alone. Learn more and enroll today.
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COVER FEATURE
How CURE-Funded Research Impacts Patients' Lives Before 1998, there were few solid medical answers to parents’ questions regarding their child’s epilepsy diagnosis. Medications and procedures that were available at the time were often “dead ends,” leaving many frustrated with their inability to stop the unending seizures. But once Susan Axelrod and a small group of parents paved the way for CURE, that frustration has been unified into one voice and echoed across the globe—resulting in the support of generous donors that has allowed CURE to fund more than 200 cutting-edge projects in 15 countries. ach year CURE awards grants for novel, cutting-edge research projects that represent the ultimate goal of curing epilepsy; the researchers behind these projects inspire us through their dedication and continual pursuit of answers and solutions. Elsa Rossignol, MD, MSc and Timothy Simeone, PhD are two such researchers giving families hope in their fight.
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Elsa Rossignol, MD, MSc
Dr. Rossignol of University of Montreal received the 2014 Pediatric Epilepsy Award in Memory of Danny Tromberg from the New York Friends of CURE for her research on epileptic encephalopathies (EE), severe childhood disorders characterized by aggressive epilepsy that attacks the growing brain and causes cognitive and behavioral deterioration. She is working on identifying the causes of EE and determining the precise moment when something goes awry in the brain. With better understanding of the causes and mechanisms, treatments and cures can be developed.
When Norene Gill’s daughter Sierra was nine months old, Norene wished she had known exactly what was going on in her daughter’s brain. One day, Sierra slumped over in her walker and sounded as if she was choking. Norene immediately called 911, and the emergency responders determined Sierra was experiencing a seizure episode. When the seizing stopped, the paramedic asked if Norene wanted to hold Sierra. “I was afraid to hold her,” said Norene. “I thought I would break her. I had no idea what happened.” This led to revolving visits to doctors’ offices across the country, but no consensus on a diagnosis. The prescribed medications and treatments, Norene and Sierra Gill including vagus nerve stimulation, eventually reduced Sierra’s seizures from 100+ per day to two per year. However, each medication came with a litany of side effects, resulting in behavioral changes and hospital stays every two months for pneumonia. “Sierra is now 16 but has the cognitive abilities of a one-year-old. If there was research available at the time that could’ve diagnosed her faster, who knows how differently things would’ve turned out?” said Norene. “The brain is a mystery. If researchers like Dr. Rossignol could unlock it, that would mean the world.”
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“ We don’t have all of the answers after 18 years, but as researchers continue delving deeper and deeper into the causes and mechanisms of epilepsy and unveiling new discoveries layer by layer, new learnings give us hope for a seizure-free future. That is why our commitment is unrelenting.” - Tracy Dixon-Salazar, PhD, Associate Research Director, CURE
Dr. Simeone of Creighton University specializes in research on the ketogenic diet, a rigorous high-fat, low-carbohydrate/protein diet that mimics starvation and suppresses seizures. He received CURE’s Vogelstein Pediatric Epilepsy Award in 2013 for his work and recently published several papers on his findings. Dr. Simeone aims to identify what makes the ketogenic diet work and has identified a key protein which mediates the diet’s effects. He hopes his findings will simplify the manageability of this diet for patients and their families. For Mary Armstrong-Rogers and her three-year-old son Henry, Dr. Simeone’s research brings a sigh of relief. “Keto takes patience, acute attention to detail, creativity, willingness and commitment of the child, lots and lots of time, and often can be expensive,” said Mary. “The most difficult part of having Henry on the ketogenic diet is the way it has disrupted our family's normal behavior. We can’t be spontaneous when food is involved.”
Timothy Simeone, PhD
After suffering up to 70 seizures per day, Henry was placed on the ketogenic diet and has been seizure-free since. But as of yet, no one has been able to explain exactly why.
“The research Dr. Simeone is doing is a dream come true for us. For my husband and I, a cure would mean that we wouldn't have to experience the heartbreak of watching our child struggle through this violent and damaging disorder. A long-term solution or cure would mean that Henry wouldn't live under the shadow of epilepsy—that we could know for certain that seizures would not hold him back from doing whatever he sets his sights on.” As Dr. Simeone’s research uncovers more, the hope is that one day, Henry’s family and many others touched by epilepsy will never have to witness their child suffering a seizure again.
Mary and Henry Armstrong-Rogers
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IN THE COMMUNITY
CURE Brought the Power of Science to the Community! After a successful inaugural event in San Francisco this past June, CURE has brought the ‘Power of Science’ to more communities across the country. We were just in Washington, D.C. at the National Geographic Museum on September 17, and headed back to the west coast to host Day of Science at Epilepsy Awareness Day at Disneyland on November 2. All who attended agreed…Day of Science offers an exciting day of learning, networking and fun!
Day of Science attendees received: The latest epilepsy research and what it means for individuals and families touched by epilepsy Information on cutting-edge technologies and treatments The opportunity to engage with other families in the epilepsy community Q&A sessions and Lunch & Learn Fun activities for the entire family
Go to our Facebook page to see photos from the Day of Science events in San Francisco, Washington, D.C., and Epilepsy Awareness Day at Disneyland Resort. We hope you can join us in 2017! For more information about Day of Science presented by
i CURE, or to learn how to host an event in your community, email dos@CUREepilepsy.org! Thank you to our Day of Science sponsors!
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GET INVOLVED
CURE Crew Events Thank you for joining us at our many CURE Crew events across the nation. PAST CURE CREW EVENTS Thank you to our volunteers for the hard work and dedication put into every CURE Crew event— together you’ve helped raise over $300,000 for epilepsy research to date in 2016! See the latest activities. Mags’ Bags Tournament – Illinois Meridian 5k Run/Walk – Michigan
The Violet Femmes ran their third straight Ragnar relay this year from Cumberland, MD to Washington, D.C.
RE: Epilepsy 2016: Silent & Live Auction – Illinois 6th Annual Teresa's Birthday Benefit for CURE – California Croquet for a CURE – Massachusetts Rally North America's 4th Annual Ohio Valley 700 – Ohio 3rd Annual Fox Hollow Farms Women’s Sporting Clay’s Open – Michigan
Rally North America 700
L to R: Chris Clark, Hannah Jorjorian, Jill Siar, Amy Karasick, Maureen Engbrecht, Melissa Loesch, Tim Loesch of RE: Epilepsy
Host your own event in November for Epilepsy Awareness Month! This November, help spread the word about epilepsy and why additional research funding is needed to find a cure. Join us for Epilepsy Awareness Month!
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Recapping milestones and strategizing community engagement goals, the CURE Crew Summit in September was an invigorating meeting.
Interested in learning how to become a CURE Crew host or volunteer? 312-255-1801 events@CUREepilepsy.org www.CUREepilepsy.org
Thank you to our CURE Crew Sponsor!
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Get Your State on the All-New CURE Events Map Find new ways to join our mission!
CURE Events are a fun and exciting way to connect with others in the community, support epilepsy research and raise awareness by spreading the word. From races, car washes and luaus to CURE-sponsored Signature Events and scientific conferences, there is a way for everyone to get involved in our mission to cure epilepsy!
All upcoming events are automatically displayed below the map for easy access
Each event has a sharing tool to post the event to your social media feeds, as well as links to learn more and register 18
Users can toggle between upcoming and past events
Click a state to display only events that are taking place in that state below the map
Hover over a specific state and highlight it to see the total number of past/upcoming events in that state
How to get your state added to the CURE Events Map Don’t see a red pin on your state? You can help get your state added! Host a CURE Crew Event or fundraising campaign and we will add it to the new CURE Events map. See everything the CURE family is involved in and get involved yourself at the all-new CURE Events map. Be sure to share your feedback and bookmark the page!
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CURE BOARD OF DIRECTORS 2016 Susan Axelrod – Founding Chair* Sharon O’Keefe – Board Chair* Ann Benschoter – Chair-elect* Scott Copeland – Director Blake Cunneen – Treasurer* Phil Emery – Director Lynn Fleisher, PhD, JD – Director* Carol Fulp – Director* Paul Heldman – Secretary* Celia Pohani Huber – Director T. Scott Leisher – Director Evelyn Nussenbaum – Director* Stacey Pigott – Director C. Renzi Stone – Director Robin Harding – Chief Executive Officer* *Member of Executive Committee
CURE EDITORIAL TEAM Brenda Aranda – Director, Marketing and Communications Editor-in-Chief Gregory McElroy – Manager, Multimedia Content Managing Editor Molly Collins – Manager, Integrated Marketing Associate Editor
Our mission is to CURE epilepsy, transforming and saving millions of lives. We identify and fund cutting-edge research, challenging scientists worldwide to collaborate and innovate in pursuit of this goal. Our commitment is unrelenting. 430 West Erie Street, Suite 210 Chicago, IL 60654 main 312.255.1801 | fax 312.255.1809 | www.CUREepilepsy.org | info@CUREepilepsy.org
Hope. Innovation. Discovery. A publication of CURE © 2016 All rights reserved.