Dravet Syndrome Foundation
Encyclopedia
The Dravet Syndrome Foundation (DSF) is a volunteer run, non-profit organization
based in the United States
. The mission of the foundation is to aggressively raise research funds for Dravet's syndrome and related epilepsies
, while providing support to affected individuals and families. The Dravet Syndrome Foundation is listed as a research and support organization on National Organization of Rare Diseases's (NORD) database.
It was established in the state of Connecticut
and was designated a tax-exempt public charity in the United States in September 2009 by the Internal Revenue Service
under Section 501(c)3.
s, neurologist
s, and other professionals with a strong interest in Dravet syndrome and related epilepsies to establish a “research roadmap”. By allowing this consortium of specialists to establish a plan, the Dravet Syndrome Foundation can facilitate the development and implementation of better treatments by funding research projects that address the critical challenges of this syndrome and which will offer the most promising breakthroughs at the fastest pace possible. This meeting takes place each year just prior to the commencement of the American Epilepsy Society (AES) Conference.
Neurology Department and Miami Children's Hospital
Brain Institute but is available to all interested researchers. It will collect basic information and genetic test results
of individuals with Dravet syndrome and related epilepsies worldwide. The establishment of this registry will expedite future clinical trial
s and will serve to improve communication of ideas amongst interested researchers, as well as assure rapid distribution of any new information that may benefit patients and their families.
or other assistance programs.
s, private fundraising events, corporate sponsorships and grants, the Dravet Syndrome Foundation produces two major annual fundraising
events: Ciara's Butterfly Bash and Steps Toward A Cure.
Ciara’s Butterfly Bash is the Dravet Syndrome Foundation's annual signature event where money is raised for research while honoring a professional who has gone above and beyond in the field of Dravet syndrome and related epilepsies. It is held each March in Greenwich, Connecticut
. In 2011, over $125,000 was raised for research in one evening. Steps Toward A Cure consists of family-friendly fundraising walks, as well as the RACRE series of fundraising half-marathons. In 2010, over $165,000 was raised for research at nine walk locations across the U.S.
(DSF Spain). Both organizations share the same mission and work closely together, but have separate Boards of Directors and Scientific Advisory Boards. DSF Spain will be announcing its first research grant award in Summer 2011.
Dravet Syndrome Foundation Spain
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...
based in the United States
United States
The United States of America is a federal constitutional republic comprising fifty states and a federal district...
. The mission of the foundation is to aggressively raise research funds for Dravet's syndrome and related epilepsies
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...
, while providing support to affected individuals and families. The Dravet Syndrome Foundation is listed as a research and support organization on National Organization of Rare Diseases's (NORD) database.
History
The Dravet Syndrome Foundation was founded by parents with the purpose of expediting research to find a cure and better treatments for their afflicted children.It was established in the state of Connecticut
Connecticut
Connecticut is a state in the New England region of the northeastern United States. It is bordered by Rhode Island to the east, Massachusetts to the north, and the state of New York to the west and the south .Connecticut is named for the Connecticut River, the major U.S. river that approximately...
and was designated a tax-exempt public charity in the United States in September 2009 by the Internal Revenue Service
Internal 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...
under Section 501(c)3.
Programs
In accordance with their mission, the Dravet Syndrome Foundation focuses its work in four areas: Research Grants; Research Roundtable; International Ion Channel Epilepsy Patient Registry (IICEPR); and the International Patient Assistance Grant (PAG) Program.Research Grant Program
Grants are offered for research projects directly related to Dravet syndrome and associated epilepsies. These grants fund initial research hypotheses that have not been fully explored. The results extracted from this type of research will help bring untested research to the point that it can qualify for larger governmental funding. Research applications are judged principally on novelty of the hypotheses, innovative approaches with a direct relevance and application to Dravet syndrome and related conditions, scientific quality, strength of approach, and likelihood of success.Research Roundtable
This annual meeting allows researchers, geneticistGeneticist
A geneticist is a biologist who studies genetics, the science of genes, heredity, and variation of organisms. A geneticist can be employed as a researcher or lecturer. Some geneticists perform experiments and analyze data to interpret the inheritance of skills. A geneticist is also a Consultant or...
s, neurologist
Neurologist
A neurologist is a physician who specializes in neurology, and is trained to investigate, or diagnose and treat neurological disorders.Neurology is the medical specialty related to the human nervous system. The nervous system encompasses the brain, spinal cord, and peripheral nerves. A specialist...
s, and other professionals with a strong interest in Dravet syndrome and related epilepsies to establish a “research roadmap”. By allowing this consortium of specialists to establish a plan, the Dravet Syndrome Foundation can facilitate the development and implementation of better treatments by funding research projects that address the critical challenges of this syndrome and which will offer the most promising breakthroughs at the fastest pace possible. This meeting takes place each year just prior to the commencement of the American Epilepsy Society (AES) Conference.
International Ion Channel Epilepsy Patient Registry (IICEPR)
This registry (co-funded with ICE Epilepsy Alliance) is owned by University of MichiganUniversity of Michigan
The University of Michigan is a public research university located in Ann Arbor, Michigan in the United States. It is the state's oldest university and the flagship campus of the University of Michigan...
Neurology Department and Miami Children's Hospital
Miami Children's Hospital
Miami Children's Hospital is South Florida’s only licensed specialty hospital exclusively for children with more than 650 attending physicians and over 130 pediatric sub-specialists. The 289-bed hospital is renowned for excellence in all aspects of pediatric medicine and is routinely ranked among...
Brain Institute but is available to all interested researchers. It will collect basic information and genetic test results
Genetic testing
Genetic testing is among the newest and most sophisticated of techniques used to test for genetic disorders which involves direct examination of the DNA molecule itself. Other genetic tests include biochemical tests for such gene products as enzymes and other proteins and for microscopic...
of individuals with Dravet syndrome and related epilepsies worldwide. The establishment of this registry will expedite future clinical trial
Clinical trial
Clinical trials are a set of procedures in medical research and drug development that are conducted to allow safety and efficacy data to be collected for health interventions...
s and will serve to improve communication of ideas amongst interested researchers, as well as assure rapid distribution of any new information that may benefit patients and their families.
International Patient Assistance Grant (PAG) Program
This program offers grants to patients with Dravet syndrome and associated epilepsies for necessary medical expenses associated with these conditions that are not covered through private insuranceHealth insurance
Health insurance is insurance against the risk of incurring medical expenses among individuals. By estimating the overall risk of health care expenses among a targeted group, an insurer can develop a routine finance structure, such as a monthly premium or payroll tax, to ensure that money is...
or other assistance programs.
Scientific Advisory Board
The Dravet Syndrome Foundation’s Scientific Advisory Board (SAB) oversees the organization's research activities. They review and approve all research grant applications and meet annually with other interested researchers and scientists to discuss innovative and promising research in the field of Dravet syndrome and associated epilepsies.Board Chair
- Jack M. Parent, MD, University of Michigan Medical Center, Ann Arbor, MichiganAnn Arbor, MichiganAnn Arbor is a city in the U.S. state of Michigan and the county seat of Washtenaw County. The 2010 census places the population at 113,934, making it the sixth largest city in Michigan. The Ann Arbor Metropolitan Statistical Area had a population of 344,791 as of 2010...
Board Members
- Scott Baraban, PhD, University of California, San FranciscoUniversity of California, San FranciscoThe University of California, San Francisco is one of the world's leading centers of health sciences research, patient care, and education. UCSF's medical, pharmacy, dentistry, nursing, and graduate schools are among the top health science professional schools in the world...
, San Francisco, CaliforniaSan Francisco, CaliforniaSan Francisco , officially the City and County of San Francisco, is the financial, cultural, and transportation center of the San Francisco Bay Area, a region of 7.15 million people which includes San Jose and Oakland... - Jane Hsiao, PhD, Vice-Chair & Chief Technology Officer of Opko Health
- Lori Isom, PhD,University of Michigan Medical Center, Ann Arbor, Michigan
- Sookyong Koh, MD, PhD, 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...
, ChicagoChicagoChicago is the largest city in the US state of Illinois. With nearly 2.7 million residents, it is the most populous city in the Midwestern United States and the third most populous in the US, after New York City and Los Angeles...
, IllinoisIllinoisIllinois is the fifth-most populous state of the United States of America, and is often noted for being a microcosm of the entire country. With Chicago in the northeast, small industrial cities and great agricultural productivity in central and northern Illinois, and natural resources like coal,... - Miriam Meisler, PhD, University of Michigan Medical Center, Ann Arbor, Michigan
- Elaine Hughes, MBBS, King's College HospitalKing's College HospitalKing's College Hospital is an acute care facility in the London Borough of Lambeth, referred to locally and by staff simply as "King's" or abbreviated internally to "KCH"...
and Evelina Children's HospitalEvelina Children's HospitalEvelina Children's Hospital is a specialist NHS hospital in London. It is administratively a part of Guy’s & St Thomas’ NHS Foundation Trust and provides teaching hospital facilities for King's College London...
, LondonLondonLondon is the capital city of :England and the :United Kingdom, the largest metropolitan area in the United Kingdom, and the largest urban zone in the European Union by most measures. Located on the River Thames, London has been a major settlement for two millennia, its history going back to its...
, EnglandEnglandEngland is a country that is part of the United Kingdom. It shares land borders with Scotland to the north and Wales to the west; the Irish Sea is to the north west, the Celtic Sea to the south west, with the North Sea to the east and the English Channel to the south separating it from continental... - Linda Laux, MD, Children's Memorial Hospital, Chicago, Illinois
Fundraising
In addition to private donationDonation
A donation is a gift given by physical or legal persons, typically for charitable purposes and/or to benefit a cause. A donation may take various forms, including cash, services, new or used goods including clothing, toys, food, and vehicles...
s, private fundraising events, corporate sponsorships and grants, the Dravet Syndrome Foundation produces two major annual fundraising
Fundraising
Fundraising or fund raising is the process of soliciting and gathering voluntary contributions as money or other resources, by requesting donations from individuals, businesses, charitable foundations, or governmental agencies...
events: Ciara's Butterfly Bash and Steps Toward A Cure.
Ciara’s Butterfly Bash is the Dravet Syndrome Foundation's annual signature event where money is raised for research while honoring a professional who has gone above and beyond in the field of Dravet syndrome and related epilepsies. It is held each March in Greenwich, Connecticut
Greenwich, Connecticut
Greenwich is a town in Fairfield County, Connecticut, United States. As of the 2010 census, the town had a total population of 61,171. It is home to many hedge funds and other financial service companies. Greenwich is the southernmost and westernmost municipality in Connecticut and is 38+ minutes ...
. In 2011, over $125,000 was raised for research in one evening. Steps Toward A Cure consists of family-friendly fundraising walks, as well as the RACRE series of fundraising half-marathons. In 2010, over $165,000 was raised for research at nine walk locations across the U.S.
Delegations
In 2011, a group of parents formed a delegation of the Dravet Syndrome Foundation in SpainSpain
Spain , officially the Kingdom of Spain languages]] under the European Charter for Regional or Minority Languages. In each of these, Spain's official name is as follows:;;;;;;), is a country and member state of the European Union located in southwestern Europe on the Iberian Peninsula...
(DSF Spain). Both organizations share the same mission and work closely together, but have separate Boards of Directors and Scientific Advisory Boards. DSF Spain will be announcing its first research grant award in Summer 2011.
Dravet Syndrome Foundation Spain
Partner Organizations
The quickest way to a cure for a rare disease such as Dravet syndrome is by uniting families and researchers in a global collaboration. The Dravet Syndrome Foundation works with the following like-minded organizations to assure rapid distribution of information and to avoid duplication of efforts and research dollars.- CURE - Citizens United for Research in Epilepsy
- Joey's SongJoey's Song"Joey's Song" was a 1959 release for Bill Haley & His Comets. It was one of the band's last successful commercial releases. The song only made #46 on the Billboard Charts and #35 on Cashbox, however the song did make #1 in Australia for 8 weeks from December 12, 1959 to January 30, 1960 based on...
2010
- Sookyong Koh, MD, PhD, Novel Therapies to Block Epileptogenesis in Dravet Syndrome Mice
- Sebastian Maier, MD, PhD and Massimo Mantegazza, PhD (co-funded with CURE), Cardiac arrhythmias and SUDEP in SMEI and other Nav1.1 (SCN1A) related epilepsies
- Jack M. Parent, MD, and Ian Miller, MD (co-funded with ICE Epilepsy Alliance), International Ion Channel Epilepsy Patient Registry (IICEPR)
2011
- Jack M. Parent, MD, Readthrough Treatment of Dravet Syndrome Caused by Nonsense SCN1A Mutations (listed under UMMS Awarded External Grants, Neurology)
- Scott Baraban, PhD (co-funded with CURE), Gene profiling and high-throughput drug screening in zebrafish model of Dravet syndrome
See Also
- Dravet syndrome
- SMEI
- GEFS+
- EpilepsyEpilepsyEpilepsy 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...
- Epileptic seizureSeizureAn epileptic seizure, occasionally referred to as a fit, is defined as a transient symptom of "abnormal excessive or synchronous neuronal activity in the brain". The outward effect can be as dramatic as a wild thrashing movement or as mild as a brief loss of awareness...