STRIKE OUT DRAVET BENEFITING THE DRAVET SYNDROME FOUNDATION
On Thursday, May 11th, guests gathered at Kings Dining and Entertainment in the Seaport area of Boston for Strike Out Dravet.
BOSTON, MA, UNITED STATES, May 19, 2023/EINPresswire.com/ -- STRIKE OUT DRAVET BENEFITING THE DRAVET SYNDROME FOUNDATIONOn Thursday, May 11th, guests gathered at Kings Dining and Entertainment in the Seaport area of Boston for Strike Out Dravet. This fundraising event was previously held in New York City, and hailed as City Bash. This year’s event was hosted by local families in support of the mission of the Dravet Syndrome Foundation (DSF) to fund cutting-edge research into Dravet syndrome and improve the quality of life for patients and families.
Seven local families (Stephanie & Josh Goldman, Nicky Stafford & Todd Hadden, Micah & Abby Hemani, Bridget & Gregg Newton, Barbara & John Swoyer, Karina & Daniel Fischer, and Amy & Lenny Lopez) planned the event in honor of their loved ones living with Dravet syndrome. The evening was filled with bowling, raffles, auctions, drinks and dinner. Together, with the support of their families, friends, and surrounding community, they raised over $435,000 for the programs of DSF that support research as well as patient support and advocacy.
Said Executive Director, Mary Anne Meskis, “This year’s event exceeded all expectations. We are so appreciative of the generosity of the Boston community. So many came together to learn about Dravet syndrome and support DSF, and it was a truly fun and magical night.”
Our Title Sponsor for this year’s event was Boston-based Draft Kings. Other sponsors included Atreides Management, The Bower Family, Jazz Pharmaceuticals, Takeda, Biocodex, UCB, Stoke Therapeutics, CAMP4 Therapeutics, Tevard Biosciences, The Stafford/Hadden Family, and Love, Tito’s. Kings Dining and Entertainment was this year’s In-Kind Sponsor.
About Dravet syndrome
Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life. Patients suffer from frequent and multiple types of seizures, including life-threatening prolonged seizures that can last for hours (status epilepticus), as well as other health comorbidities and developmental delays. Patients face an 18-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), status epilepticus, and accidents. Current treatment options are limited and the constant care required for someone suffering from Dravet syndrome severely impacts not only the patient, but the quality of life for the entire family.
About Dravet Syndrome Foundation
Dravet Syndrome Foundation (DSF) is a 501c(3) nonprofit organization whose mission is to aggressively raise funds for Dravet syndrome and related epilepsies; to support and fund research; increase awareness; and to provide support to affected individuals and families. Since its inception in 2009, DSF has awarded almost $6.7M in research grant awards and over $210K in patient assistance grants. More information is available at www.dravetfoundation.org.
Mary Anne Meskis
Dravet Syndrome Foundation
+1 203-392-1955
email us here
2023 Strike Out Dravet
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