Fintepla Photo Contest Raises $50K for Dravet, Epilepsy Foundations

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by Mary Chapman |

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minorities with rare diseases | Dravet Syndrome News | grant awards

A total of $50,000 has been raised though a Zogenix photo contest to support the Dravet Syndrome Foundation (DSF) and the Epilepsy Foundation.

The company’s donation, to be equally divided, was made possible through the people who took part in the Fintepla Photo Diary, a Zogenix effort designed to celebrate everyday moments, and fewer seizures, in the lives of Dravet syndrome patients.

Dravet is characterized by prolonged seizures, lasting five to 30 minutes or longer, that are difficult to control with anti-epilepsy medications. Children with this disorder can also have developmental, motor, and behavioral difficulties.

Zogenix developed and markets Fintepla (fenfluramine), an oral Dravet therapy that is taken with other anti-epileptic treatments to lessen the frequency of seizures. It approved in both the U.S. and European Union to treat patients starting at age 2.

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More than 200 photos were submitted for the contest, with Zogenix pledging a $25 donation for every photo “liked” or shared on social media.

“We appreciate community initiatives like the Photo Diary that celebrate the Dravet syndrome community and the progress we are making together in treating Dravet syndrome,” said Mary Anne Meskis, executive director of the DSF, in a press release.

“The powerful images families shared remind us of how meaningful moments between seizures are, and the difference they make for families living with Dravet syndrome and for us all,” Meskis said. “We’d like to thank the Dravet syndrome community for participating in the Photo Diary and for raising $25,000 to support our organization’s ongoing mission to one day cures this rare, intractable form of epilepsy.”

Three families whose photos received the most social likes or shares were also awarded prizes.

“These everyday moments in life with fewer seizures have been a blessing,” said Erika A., the Dravet caregiver whose submission of a young patient and his siblings dressed in Chicago Cubs baseball garb won the grand prize of a professional photo shoot.

“We were motivated to share our photos for the opportunity to give back to the community and show our experience with Fintepla. We’re proud to celebrate these favorite moments with our community and honored to represent this inspiring campaign as the contest grand prize winner,” she added.

Contest runners-up received iPads. Those awardees included Tina M. for her submission calling attention to a patient’s “bright eyes,” and Case D., whose photo is of a young girl in a summer dress wearing yellow-frame sunglasses and drinking from a red cup.

The DSF works to fund research, heighten disease awareness, and support patients and their families. The Epilepsy Foundation provides community services, public education, federal and local advocacy, seizure first aid training, and supports research into new treatments.