Benefit for children with Dravet Syndrome
Published 12:29 pm, Friday, March 9, 2012
The Dravet Syndrome Foundation, a Connecticut-based nonprofit organization, will gather 300 friends, family and members of the medical community to raise money for research and awareness for Dravet syndrome and related epilepsies. Since its inception in October 2009, the DSF has awarded nearly $1 million in research grant awards.
The venue for the gala event will be the Hyatt Regency Greenwich in Greenwich. The celebration features silent auction and cocktails, followed by a live auction, dinner and dancing to the band Hot House. It will take place on Saturday, March 31, from 6:30 to 11:30 p.m. Tickets are $150 per person and can be purchased by contacting firstname.lastname@example.org. Sponsors of the event include Madi's Friends, Lauren Winter Interiors, LLC, United Rentals, Montanari Financial Partners and Transgenomic Labs.
Dravet Syndrome, also known as Severe Myoclonic Epilepsy of Infancy, is a rare and catastrophic form of intractable epilepsy that begins in infancy and for which there is currently no cure. Seizures persist in frequency as the child gets older and seizure control is difficult, with many seizure types that are resistant to current medical therapies. Developmental delays appear during the second year of life, although the severity varies among affected children. Dravet syndrome has no geographic or ethnic boundaries.
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The Dravet Syndrome Foundation announces the Ion Channel Epilepsy Program at Miami Children's Hospital as this year's gala honoree. The Ion Channel Epilepsy Program was created in January 2009 by the Miami Children's Brain Institute to standardize and improve the clinical care provided to children with epilepsy caused by ion channel mutations like Dravet syndrome. Under the direction of Ian Miller, MD, the program is a true collaboration between the medical staff, parents and patients. Through their efforts, the Ion Channel Epilepsy Program at MCH is succeeding in obtaining one of its goals and leading the way to "improve care for all children with epilepsy caused by ion channel disorders.
To inquire about Volunteer and Sponsorship Opportunities or donate an auction item, mail Lori.email@example.com.