International Dravet Epilepsy Action League
Encyclopedia
The International Dravet Epilepsy Action League (IDEA League) is an American non-profit organization
that has created an international partnership of parents and professionals with the purpose of creating greater awareness and understanding of Dravet syndrome and the spectrum of related genetic forms of epilepsy
. The IDEA League is a nonprofit organization that was founded by parents of children with Dravet syndrome in October 2005. The National Institutes of Health
direct individuals seeking information on Dravet Syndrome to the IDEA League. The IDEA League represents Dravet Syndrome and is a member of the National Organization for Rare Disorders
(NORD).
in November 2006.
Medical Center in Nashville, Tennessee.
The Second Annual Derek’s Dash, which benefited the Derek Rudawsky Research Fund, took place on August 29, 2010 at at Village Greens Park in Greenwood Village, Colorado. The event included a 5K walk/run and silent auction. The event raised $30,000 and is the first Funds of Hope research grant to reach the $30,000 mark to launch a study.
Medical Advisory Board members:
CCR-CCN clinics are committed to providing physician-guided, patient-centered comprehensive care. They recognize that Dravet syndrome affects the whole child and that the most important members of the team are the patient and parents. CCR-CCN clinics will be building teams of caregivers, including a qualified epileptologist, nurse practitioner, social worker and parent liaison. Clinics will include an epilepsy monitoring unit with appropriately trained staff and a ketogenic diet program with a dedicated keto-dietician.
Non-profit organization
Nonprofit organization is neither a legal nor technical definition but generally refers to an organization that uses surplus revenues to achieve its goals, rather than distributing them as profit or dividends...
that has created an international partnership of parents and professionals with the purpose of creating greater awareness and understanding of Dravet syndrome and the spectrum of related genetic forms of epilepsy
Epilepsy
Epilepsy is a common chronic neurological disorder characterized by seizures. These seizures are transient signs and/or symptoms of abnormal, excessive or hypersynchronous neuronal activity in the brain.About 50 million people worldwide have epilepsy, and nearly two out of every three new cases...
. The IDEA League is a nonprofit organization that was founded by parents of children with Dravet syndrome in October 2005. The National Institutes of Health
National Institutes of Health
The National Institutes of Health are an agency of the United States Department of Health and Human Services and are the primary agency of the United States government responsible for biomedical and health-related research. Its science and engineering counterpart is the National Science Foundation...
direct individuals seeking information on Dravet Syndrome to the IDEA League. The IDEA League represents Dravet Syndrome and is a member of the National Organization for Rare Disorders
National Organization for Rare Disorders
The National Organization for Rare Disorders is an American non-profit organization aiming to provide support individuals with rare diseases by advocating and funding research, education, and networking among service providers...
(NORD).
History
The IDEA League was founded in October 2005 by parents of children with Dravet syndrome as an international partnership of parents and professionals united in the purpose of creating greater awareness and understanding of Dravet syndrome and the spectrum of related genetic forms of epilepsy. The organization was incorporated in the state of Minnesota, USA, in February 2006; and designated a 501(c)3 tax-exempt public charity by the US Internal Revenue ServiceInternal Revenue Service
The Internal Revenue Service is the revenue service of the United States federal government. The agency is a bureau of the Department of the Treasury, and is under the immediate direction of the Commissioner of Internal Revenue...
in November 2006.
Research Grants
The IDEA League awards a yearly grant to researchers studying topics related to Dravet Syndrome and therapies for the condition. The 2010 Research Award went to Dr. Jing-Qiong (Katty) Kang from Vanderbilt UniversityVanderbilt University
Vanderbilt University is a private research university located in Nashville, Tennessee, United States. Founded in 1873, the university is named for shipping and rail magnate "Commodore" Cornelius Vanderbilt, who provided Vanderbilt its initial $1 million endowment despite having never been to the...
Medical Center in Nashville, Tennessee.
Funds of Hope
Families affected by Dravet Syndrome may set up and raise funds for a research grant named in the honor of their loved one. The named research funds are set up as $30,000, two-year awards. To date, the Haley Smith Research Fund, Derek Rudawsky Research Fund, and Ryan Smith Research Fund have been established. One hundred percent of the money raised for these funds will go directly to research and will contribute to the better understanding and treatment of Dravet syndrome.The Second Annual Derek’s Dash, which benefited the Derek Rudawsky Research Fund, took place on August 29, 2010 at at Village Greens Park in Greenwood Village, Colorado. The event included a 5K walk/run and silent auction. The event raised $30,000 and is the first Funds of Hope research grant to reach the $30,000 mark to launch a study.
Medical Advisory Board
The IDEA League has brought together leading researchers from across the world to sit on their medical advisory board. All proposed research grants are reviewed by the advisory board and the board selects the projects to be awarded grants.Medical Advisory Board members:
- Charlotte Dravet, MD; Retired Pediatric Neurologist; Marseille, France
- Michelle Bureau, MD; Centre Saint Paul, Hospital Henri Gastaut; Marsaille, France
- Carol Camfield, MD; Dalhousie UniversityDalhousie UniversityDalhousie University is a public research university located in Halifax, Nova Scotia, Canada. The university comprises eleven faculties including Schulich School of Law and Dalhousie University Faculty of Medicine. It also includes the faculties of architecture, planning and engineering located at...
; Halifax, Nova Scotia, Canada - Peter Camfield, MD; Dalhousie UniversityDalhousie UniversityDalhousie University is a public research university located in Halifax, Nova Scotia, Canada. The university comprises eleven faculties including Schulich School of Law and Dalhousie University Faculty of Medicine. It also includes the faculties of architecture, planning and engineering located at...
; Halifax, Nova Scotia, Canada - Catherine Chiron, MD, PhD; French Institute for Medical Research (INSERM); Paris, France
- Helen Cross, MBChB, PhD, FRCP, FRCPCH; UCL - Institute of Child Health, Great Ormond Street Hospital for Children, NHS Trust; London, England, UK
- Bernardo Dalla Bernardina, MD; University of VeronaUniversity of VeronaThe University of Verona is a university located in Verona, Italy. It was founded in 1982 and is organized in 8+2 Faculties.-History:In Verona, at the beginning of the 1950s, a group of Catholic intellectuals established the "Ludovico Antonio Muratori" Free High School of Historical Science...
; Verona, Italy - Renzo Guerrini, MD; University of FlorenceUniversity of FlorenceThe University of Florence is a higher study institute in Florence, central Italy. One of the largest and oldest universities in the country, it consists of 12 faculties...
; Florence, Italy - Elaine Hughes, MBBS; Evelina Children’s Hospital, King’s College Hospital; London, England, UK
- Linda Laux, MD; Children’s Memorial Hospital, Northwestern UniversityNorthwestern UniversityNorthwestern University is a private research university in Evanston and Chicago, Illinois, USA. Northwestern has eleven undergraduate, graduate, and professional schools offering 124 undergraduate degrees and 145 graduate and professional degrees....
’s Feingold School of Medicine; Chicago, Illinois, USA - Rima Nabbout, MD, PhD; Hospital Saint Vincent de Paul, French Institute for Medical Research (INSERM); Paris, France
- Hirokazu Oguni, MD; Tokyo Women’s Medical University; Tokyo, Japan
- Ingrid Scheffer, MBBS, PhD; University of MelbourneUniversity of MelbourneThe University of Melbourne is a public university located in Melbourne, Victoria. Founded in 1853, it is the second oldest university in Australia and the oldest in Victoria...
, Austin Health Epilepsy Research Centre; West Heidelberg, Victoria, Australia - Beverly Wical, MD; Gillette Children’s Specialty Healthcare; University of Minnesota Medical SchoolUniversity of Minnesota Medical SchoolThe University of Minnesota Medical School is the medical school of the University of Minnesota. It is a combination of two campuses situated in Minneapolis and Duluth, Minnesota....
; St. Paul, Minnesota, USA - Sameer Zuberi, MRCP, MBChB, MRCPCH; Royal Hospital for Sick ChildrenRoyal Hospital for Sick ChildrenThe Royal Hospital for Sick Children may refer to:*Royal Hospital for Sick Children, Edinburgh*Royal Hospital for Sick Children, Glasgow...
; Glasgow, Scotland, UK
Collaborative Clinical Research and Comprehensive Care Network
In December 2008, the IDEA League established its Collaborative Clinical Research and Comprehensive Care Network (CCR-CCN). The purpose of the CCR-CCN is to bring together a network of referral centers committed to providing high-quality, multidisciplinary care to patients with Dravet syndrome and related disorders. Each participating epilepsy center endeavors to proactively address and treat the medical and non-medical needs of the patient in a coordinated and evidence-based manner. Centers will be collaborating to develop a standard of care for treating Dravet syndrome and to establish clinical research protocols. The IDEA League serves as a patient referral source and will sponsor educational activities for health care workers and families. In addition, the League helps coordinate communication and information sharing among centers and will be maintaining a Dravet syndrome patient registry.CCR-CCN clinics are committed to providing physician-guided, patient-centered comprehensive care. They recognize that Dravet syndrome affects the whole child and that the most important members of the team are the patient and parents. CCR-CCN clinics will be building teams of caregivers, including a qualified epileptologist, nurse practitioner, social worker and parent liaison. Clinics will include an epilepsy monitoring unit with appropriately trained staff and a ketogenic diet program with a dedicated keto-dietician.
CCR-CCN Member Centers
- Children's Hospital of PhiladelphiaChildren's Hospital of PhiladelphiaThe Children's Hospital of Philadelphia is one of the largest and oldest children's hospitals in the world. CHOP has been ranked as the best children's hospital in the United States by U.S. News & World Report and Parents Magazine in recent years. As of 2008, it was ranked #1 in the nation for...
(CHOP); Philadelphia, PA - Children's Memorial HospitalChildren's Memorial HospitalChildren's Memorial Hospital in Chicago, Illinois is a pediatric hospital. The main hospital is located in the Lincoln Park neighborhood on the north side of the city. With more than 1,100 physicians on staff and approximately 4,000 employees, Children’s Memorial focuses on 70 specialties in 17...
; Chicago, IL - Children's National Medical CenterChildren's National Medical Center- Introduction :Children’s National Medical Center , is the only exclusive provider of pediatric care in the Washington, D.C., area and the only freestanding children’s hospital between Philadelphia, Pittsburgh, Norfolk, and Atlanta...
; Washington, DC - Dartmouth-Hitchcock Medical CenterDartmouth-Hitchcock Medical CenterDartmouth-Hitchcock Medical Center is New Hampshire's only academic medical center and is headquartered on a campus in the heart of the Upper Connecticut River Valley, in Lebanon, New Hampshire....
; Lebanon, NH - Duke University Medical Center; Durham, NC
- Gillette Children's Specialty HealthcareGillette Children's Specialty HealthcareGillette Children's Specialty Healthcare is a non-profit hospital located in St. Paul, Minnesota. Its focus is pediatric medical treatment and research. It was founded by Dr...
; St. Paul, MN - Mayo ClinicMayo ClinicMayo Clinic is a not-for-profit medical practice and medical research group specializing in treating difficult patients . Patients are referred to Mayo Clinic from across the U.S. and the world, and it is known for innovative and effective treatments. Mayo Clinic is known for being at the top of...
; Rochester, MN - Miami Children’s Hospital; Miami, FL
- Seattle Children's; Seattle, WA
- UCSF Medical CenterUCSF Medical CenterThe University of California, San Francisco Medical Center is a world renowned hospital in research and a teaching hospital in San Francisco, California. It is one of the leading hospitals in the United States and with the UCSF School of Medicine has been the site of various breakthroughs in all...
; San Francisco, CA - Children's Hospital BostonChildren's Hospital BostonChildren's Hospital Boston is a 396-licensed bed children's hospital in the Longwood Medical and Academic Area of Boston, Massachusetts.At 300 Longwood Avenue, Children's is adjacent both to its teaching affiliate, Harvard Medical School, and to Dana-Farber Cancer Institute...
; Boston, MA - Northeast Regional Epilepsy Group; Hackensack, NJ
- Le Bonheur Children's Medical CenterLe Bonheur Children's Medical CenterLe Bonheur Children's Hospital is a 255-bed, tertiary care children's hospital located in Downtown Memphis, Tennessee. It has more than 500 medical staff representing 45 pediatric specialties. It is a teaching hospital affiliated with the University of Tennessee Health Science Center...
; Memphis, TN
Regional Affiliates
In an effort to better meet the diverse needs of our international membership, the IDEA League is fostering the establishment of affiliate organizations in countries around the world. This process began with the creation of the IDEA League UK in 2008 and the IDEA League France in 2009. Affiliates in Canada, Italy, and the region of the northern Balkan states (former Yugoslavia) are currently in development. In June 2010 the Netherlands affiliate of the IDEA League was established.External links
- Official site
- IDEA League profile on GuideStarGuideStarGuideStar USA, Inc. is an information service specializing in reporting on U.S. nonprofit companies. In 2010, their database contained over 5 million IRS Forms 990 filings on 1.9 million organizations.....