Butterfly Bash 2010

The Dravet Syndrome Foundation was pleased to honor Dr. Linda Laux as the 2010 Gala Honoree at Ciara’s Butterfly Bash:  A Benefit for Children with Dravet Syndrome, at the Hyatt Regency Greenwich on Saturday, March 27^th.

Master of Ceremonies, Master of Ceremonies, Mike Rinn, was the perfect host for this successful evening.  The Mardi Gras themed celebration began with a social hour filled with entertainment that included tarot card readings, a magician, and a caricature artist, while musician Renard Boissiere entertained guests with the sounds of New Orleans jazz music.  Attendees had the opportunity to bid on dozens of silent auction items donated by local businesses and individuals while enjoying cocktails, appetizers, and live entertainment.  Dinner followed, where Mary Dunkle of the National Organization of Rare Diseases (NORD) addressed the attendees with a speech highlighting the importance of researchers who were interested in looking for answers for rare diseases, such as Dravet syndrome, as well as the fact that 1 in 10 Americans suffers from a rare disease.

A tribute video of Dr. Laux was presented which helped explain what Dravet syndrome is, and to show some of the important work that Dr. Laux does.  Dr. Laux, who is based out of Children’s Memorial Hospital in Chicago, sees more Dravet patients in the U.S. than any other pediatric neurologist.  She has contributed to numerous abstracts on the subject and participated in numerous conferences to help educate families and professionals on the syndrome.  During her acceptance speech she spoke of her admiration of the dedication of the parents of her patients, the importance of research, and her belief that hope is on the horizon for the treatment of Dravet and Dravet-like syndromes.

The big announcement of the evening was made by Board President, Lori O’Driscoll.  The DSF has partnered with CURE (Citizens United for Research in Epilepsy) to fund a Dravet syndrome specific SUDEP study that will take place this year in France.  Sudden Unexplained Death in Epilepsy, or SUDEP, accounts for 10% of all epilepsy-related deaths in the general epilepsy population, with an even higher incidence seen in Dravet syndrome.  Using a mouse model, Drs.Maier & Mantegazza will investigate the occurrence of cardiac arrhythmias and their possible involvement in SUDEP.  They also plan to provide additional proof of the importance of brain sodium channels for cardiac functions.

After dinner, auctioneer Peter Hopkins lead the live auction that featured items including diamond earrings and sports memorabilia. The evening ended with dancing to the band Hot House.  Over $95,000 was raised at the gala, which was attended by more than 200 people, and these funds will go towards the DSF 2010 Research Grant awarded to Dr. Sooky Koh of Children’s Memorial Hospital.  The DSF was pleased to award a check in the amount of $50,000 to Dr. Koh at the end of the evening for the first installment of her research grant award.  We were also pleased to have Dr. Jack Parent, the DSF Medical Advisor, in attendance for the presentation of our first research grant.

Mary Anne Meskis, Vice-President, said, “This gala helps to show the commitment that the DSF has to supporting syndrome-specific epilepsy research.  It is very moving to see so many volunteers working together to make this event a success.  It demonstrates that our supporters understand how important research is to finding better treatments and a cure for Dravet syndrome and related conditions.”

This year’s event was sponsored by United Rentals; Montanari Financial Partners; Children’s Memorial Hospital; Lauren Winter Interiors, LLC; Lundbeck, Inc.; RBS Sempra Commodities; Valeant Pharmaceuticals International; and Families & Friends of Dravet Children.  Next year’s event is scheduled to take place on March 26^th  at the Hyatt Regency Greenwich, with the gala honoree to be announced.


(From Left to Right) Sooky Koh, MD, PhD, Janice Stanley, Treasurer and
Lori O'Driscoll, President