American families of Dravet patients whose seizures are treated with Fintepla (fenfluramine) – an adjunct therapy developed by Zogenix – may enter the Fintepla photo diary competition before June 9.
The company is asking patients, or their caregivers, to share photos of their daily lives, raising up to $ 50,000 for the two foundations.
The idea is to describe and celebrate what life is like with fewer crises. Fintepla is a medicine from Dravet taken with other anti-epileptic drugs to reduce the frequency of the seizures that characterize the disease. The combined contest and campaign also aims to showcase the community and encourage support among those affected by Dravet syndrome.
“These families have taught us the importance of capturing moments in everyday life that can arise when crises are not. We believe these moments are worth recognizing, ”said Sagrolikar.
“At Zogenix, we are committed to working alongside Dravet syndrome and the broader epilepsy community to celebrate more everyday moments, and we hope the Fintepla photo journal inspires others to do the same,” said he added.
After registration, participants can upload between five and seven photos, with a short caption for each. Starting June 21, community members will be able to “like” and share their favorite images on the campaign’s Facebook page once per day.
From June 21 to July 19, whenever a like or share occurs, Zogenix will donate $ 25 – up to a maximum of $ 50,000 – to the Dravet Syndrome and Epilepsy Foundations.
At the end of the campaign, the family with the most likes and shares of their submission will win an outdoor photoshoot with a local photography agency. Two finalist submissions will receive iPads. Winners will be announced on or around August 9th. Prices are limited to one person per household.
“With my daughter’s seizures better controlled, we capture even more family time,” said Bethany Goering, whose 12-year-old daughter has Dravet.
“The campaign and the contest of the photo journal Fintepla is an opportunity for us to share the hope we have between crises,” said Goering, who cares for her daughter.
“We are delighted that our participation supports advocacy groups that help other people with Dravet syndrome,” she added.
Patients with Dravet syndrome may have several seizures each day. They also present marked developmental, motor and behavioral impairments.
Fintepla was approved in the United States last year to treat Dravet patients 2 years of age and older.