A 1980's-Themed Gala to Benefit
The International Dravet Syndrome Epilepsy Action League (IDEA League) is a non-profit international partnership of parents and professionals united in the purpose of creating greater awareness and understanding of Dravet Syndrome and the spectrum of genetic, febrile sodium channel epilepsies. The IDEA League was founded by parents in October, 2005.
On March 8th, 2008, you have the opportunity to MAKE A DIFFERENCE to children and their families affected by this devastating disorder. BOOGIE FOR BABIES '2008 is a gala event/fundraiser for the IDEA League that is being hosted by Tim and Michelle Welborn of Lewisville, NC. Boogie for Babies is underwritten by the Law Offices of Timothy Welborn. All proceeds from this event will be directly donated for the benefit of the IDEA League. The regionally-acclaimed band The Plaids will be our featured performers at the Childress Vineyards from 6PM through 11PM. There will be silent and live auctions as well as heavy hors d'oeuvres, and prizes given to the best 1980's vintage outfit.
You can reserve tickets or corporate sponsorships on line or by printing the response card and mailing. If you cannot attend Boogie for Babies, you can make an individual or corporate donation as well. All donations are tax deductible. Individuals and corporate sponsors will be acknowledged in the 2008 IDEA League annual report and on IDEA League website. Corporations will have their names prominently displayed and will be acknowledged at the gala.
A Letter from Tim and Michelle
Dear Friends, Family, Colleagues, and Community:
Epilepsy is one of the oldest medical conditions of mankind and affects 40 million people worldwide. An estimated sixty-five percent of epilepsies do not have an identifiable cause. The many routes of electrical impulse conduction in the brain are targets of epilepsy research. The brain’s sodium channel is one routes of electrical conduction and mutations in this channel are associated with a spectrum of epilepsy ranging from common fever-related seizures in children to a rare, catastrophic neuro-developmental disorder known as Dravet Syndrome. The ability to easily identify a mutation that causes epilepsy allows optimization of drug treatment which includes avoiding drugs known to aggravate seizures while utilizing drugs known to decrease seizures. A commercially available simple blood test is now available that accurately detects sodium channel mutations related to epilepsy. As neurologists become more knowledgeable about the implications of this test, more sodium channel related epilepsies will unfold and the spectrum sodium channel related epilepsies will be defined. Treatment optimization related to genetics is known as pharmacogenomics, which in the near future will streamline drug development and disease management in many body systems.
Dravet Syndrome (also known as Severe Myoclonic Epilepsy of Infancy) is a rare and catastrophic disorder caused by a sodium channel mutation in eighty percent of patients. The syndrome starts with a prolonged, usually fever related seizure that occurs before a child is eighteen months old. Early diagnosis, appropriate and aggressive medication therapy, rehabilitative therapies, and enriched environment improve the outcome. Uncontrolled seizures can lead to mental retardation and death.
Lilly, our youngest daughter, had her first prolonged seizure at 5 months of age and was diagnosed with Dravet Syndrome at 13 months. Now three years old, Lilly is a happy, angelic little girl who is thriving and developing despite her odds. Lilly has had thousands of seizures, many of which have lasted as long as an hour and a half with and requiring a drug-induced coma, intubation, and intensive care to manage. She has resiliently fought this battle and her winning smile has graced the cover of The Children’s Center of Winston-Salem 2006 Annual Report and the IDEA League Physician’s Guide for the Treatment of Dravet Syndrome, which was written by Michelle. We continue to hope and work towards the best possible outcome for Lilly and all children affected by genetic sodium channel epilepsies, which may constitute a large share of the 65% of epilepsy cases with unknown causes.
One of our financial commitments that has enabled many children across the world to have an improved outcome is a local fundraiser we started in June 2006, known as Boogie for Babies. We will host the second bi-annual Boogie for Babies on March 8 at Childress Vineyards in Lexington, NC to benefit the International Dravet Syndrome Epilepsy Action League (IDEA League). The IDEA League is a non-profit corporation (Federal Tax ID Number is 20-4760085) committed to promote education, appropriate treatment, and additional research, and family support for those affected by Dravet Syndrome and related genetic, febrile sodium channel epilepsies. Michelle volunteers as the Professional Advisory Board chair of this organization. Please visit www.idea-league.org for more information.
Winston-Salem’s Boogie for Babies 2006 supported about one-third of the cost of the IDEA League’s first International Congress held in St. Paul, MN. Scientists, physicians, and families from all over the world, including Dr. Charlotte Dravet from France who discovered this disorder, were present. The growth, visibility, and respect the IDEA League has gained over the last two years through the countless volunteered hours of members, the promotion of the League by physicians throughout the world, and the professional approach to disseminating scientifically based information has created international recognition for our organization. Each volunteer has contributed their time, effort, and unique talent in a unified, altruistic effort to change the future of epilepsy. The IDEA League continues to contribute to epilepsy research by mining internal data and sharing the data with bench and clinical scientists throughout the world, facilitating and encouraging shared research efforts, and helping define the spectrum of sodium channel related epilepsies. Our efforts reach far beyond Dravet Syndrome and the United States, and span to the far corners of the world.
Our family and other IDEA League families have somehow developed strength, acceptance, and hope that lightens the burden of the grief, devastation and fear this fate brings to us. We are humbled and grateful for the compassion and generosity of others who have supported us during this unexpected journey. Thank you for supporting Winston-Salem’s Boogie for Babies 2008 and for helping us make a difference, one child at a time.
With warm regards,
Tim and Michelle Welborn