- Email: [email protected]
From the Epilepsy Foundation
Epilepsy & Behavior Epilepsy & Behavior 3 (2002) 302 www.academicpress.com
Editorial
From the Epilepsy Foundation A new grant-making entity for epilepsy research has just made its first four multiyear awards targeted to pediatric epilepsy. The Partnership for Pediatric Epilepsy Research is a consortium of epilepsy-related organizations and individuals committed to support of research into the causes, treatment, and eventual cure of childhood epilepsies. Members include the American Epilepsy Society, the Epilepsy Foundation, Anna and Jim Fantaci, Fight Against Childhood Epilepsy (f.a.c.e.s.), Neurotherapy Ventures Charitable Research Fund, and Parents Against Childhood Epilepsy (P.A.C.E.). Members of the Partnership met in New York in May and awarded grants totaling $300,000 for the first year to: Richard M. Myers, Ph.D., Stanford University School of Medicine, for studies to define the pathogenic mechanisms of seizures in Unverricht–Lundborg progressive myoclonus epilepsy (EPMI); Manesh N. Patel, Ph.D., National Jewish Medical and Research Center, for research on the role of mitochondrial superoxide in seizure susceptibility; Steven N. Roper, M.D., University of Florida College of Medicine, for research on the function of inhibitory interneurons in experimental cortical dysplasia; and Renato Rozenthal, M.D., and Solomon L. Moshe, M.D., Albert Einstein College of Medicine of Yeshiva University, for research on perinatal hypoxic–ischemic insults and the extent of delayed neurotoxicity. The Partnership explores new ground in the search for innovative and attractive ways for philanthropically inclined organizations and individuals to support research. By joining together, family foundations and parent groups can have a much greater impact on the serious unanswered questions associated with epilepsy and its treatment than they could ever have individually. One of the more novel aspects of the program is that it not only allows people to contribute, but also provides a mechanism for their active involvement in the process without sacrificing scientific merit. A true partnership is achieved by submitting all grant applications—there were more than 30 this first year—to
a rigorous, NIH-style peer review to assemble a group of scientifically meritorious projects. The final selection is made by the partners based on peer review scores. The potential for the Partnership to inspire others to raise significant funds, particularly those families in which a child has a severe form of epilepsy, is illustrated by the experience of the Rudawsky family. Staci and Svi Rudawsky are neither wealthy nor experienced in raising funds. They had a major incentive, however—the uncontrolled seizures that were making life miserable for their 7-year-old son, Derek. When they heard about the Partnership and learned that it was focused squarely on support of research into childhood epilepsy, they organized a family letter writing campaign in support of what came to be known as DerekÕs Fund. They wrote to friends, neighbors, co-workers, and acquaintances as well as family. They were stunned by the response. ‘‘We always wanted to do something,’’ people wrote as they enclosed their checks. ‘‘We always wanted to help but werenÕt sure how. Thank you for giving us the chance.’’ DerekÕs Fund had an ambitious target, so they thought—$50,000. They raised $70,000. It all went to the Partnership. ThatÕs the story of one child, and how one family channeled its pain and its stress into raising funds to fight back against epilepsy. The Epilepsy Foundation and the other members of the Partnership, which now includes the Rudawskys, are convinced that there are many, many families out there who could and would do the same. We urge readers of Epilepsy & Behavior who know of families who, like the Rudawskys, are of modest means and want to contribute in some way to move research ahead to refer them to the Research Partnership through the Epilepsy Foundation. Empowered families are the key to our shared goal of achieving major increases in the number of grants that it can support, and we believe the unique structure of the Partnership will be attractive to those families.
1525-5050/02/$ - see front matter Ó 2002 Elsevier Science (USA). All rights reserved. PII: S 1 5 2 5 - 5 0 5 0 ( 0 2 ) 0 0 0 3 8 - 0
Ann Scherer Epilepsy Foundation, 4351 Garden city Dr Landover, MD 20785, USA E-mail: [email protected]
Editorial
From the Epilepsy Foundation A new grant-making entity for epilepsy research has just made its first four multiyear awards targeted to pediatric epilepsy. The Partnership for Pediatric Epilepsy Research is a consortium of epilepsy-related organizations and individuals committed to support of research into the causes, treatment, and eventual cure of childhood epilepsies. Members include the American Epilepsy Society, the Epilepsy Foundation, Anna and Jim Fantaci, Fight Against Childhood Epilepsy (f.a.c.e.s.), Neurotherapy Ventures Charitable Research Fund, and Parents Against Childhood Epilepsy (P.A.C.E.). Members of the Partnership met in New York in May and awarded grants totaling $300,000 for the first year to: Richard M. Myers, Ph.D., Stanford University School of Medicine, for studies to define the pathogenic mechanisms of seizures in Unverricht–Lundborg progressive myoclonus epilepsy (EPMI); Manesh N. Patel, Ph.D., National Jewish Medical and Research Center, for research on the role of mitochondrial superoxide in seizure susceptibility; Steven N. Roper, M.D., University of Florida College of Medicine, for research on the function of inhibitory interneurons in experimental cortical dysplasia; and Renato Rozenthal, M.D., and Solomon L. Moshe, M.D., Albert Einstein College of Medicine of Yeshiva University, for research on perinatal hypoxic–ischemic insults and the extent of delayed neurotoxicity. The Partnership explores new ground in the search for innovative and attractive ways for philanthropically inclined organizations and individuals to support research. By joining together, family foundations and parent groups can have a much greater impact on the serious unanswered questions associated with epilepsy and its treatment than they could ever have individually. One of the more novel aspects of the program is that it not only allows people to contribute, but also provides a mechanism for their active involvement in the process without sacrificing scientific merit. A true partnership is achieved by submitting all grant applications—there were more than 30 this first year—to
a rigorous, NIH-style peer review to assemble a group of scientifically meritorious projects. The final selection is made by the partners based on peer review scores. The potential for the Partnership to inspire others to raise significant funds, particularly those families in which a child has a severe form of epilepsy, is illustrated by the experience of the Rudawsky family. Staci and Svi Rudawsky are neither wealthy nor experienced in raising funds. They had a major incentive, however—the uncontrolled seizures that were making life miserable for their 7-year-old son, Derek. When they heard about the Partnership and learned that it was focused squarely on support of research into childhood epilepsy, they organized a family letter writing campaign in support of what came to be known as DerekÕs Fund. They wrote to friends, neighbors, co-workers, and acquaintances as well as family. They were stunned by the response. ‘‘We always wanted to do something,’’ people wrote as they enclosed their checks. ‘‘We always wanted to help but werenÕt sure how. Thank you for giving us the chance.’’ DerekÕs Fund had an ambitious target, so they thought—$50,000. They raised $70,000. It all went to the Partnership. ThatÕs the story of one child, and how one family channeled its pain and its stress into raising funds to fight back against epilepsy. The Epilepsy Foundation and the other members of the Partnership, which now includes the Rudawskys, are convinced that there are many, many families out there who could and would do the same. We urge readers of Epilepsy & Behavior who know of families who, like the Rudawskys, are of modest means and want to contribute in some way to move research ahead to refer them to the Research Partnership through the Epilepsy Foundation. Empowered families are the key to our shared goal of achieving major increases in the number of grants that it can support, and we believe the unique structure of the Partnership will be attractive to those families.
1525-5050/02/$ - see front matter Ó 2002 Elsevier Science (USA). All rights reserved. PII: S 1 5 2 5 - 5 0 5 0 ( 0 2 ) 0 0 0 3 8 - 0
Ann Scherer Epilepsy Foundation, 4351 Garden city Dr Landover, MD 20785, USA E-mail: [email protected]