We are hosting the Fragile Wings Fierce Hearts gala on February 6, 2027 in Thiensville, Wisconsin and need in-person videography coverage throughout the evening. We want to document the program, entertainment, EB families, sponsors, board members, food, décor, and other meaningful moments in a way that conveys both the excitement of the event and the mission behind it. Clear audio of key speeches and presentations is important, and we would like the option to capture brief on-camera interviews with attendees for future storytelling. We may have a separate volunteer take on social-media highlights, so coverage should prioritize high-quality master footage and usable raw files.

For context on the event and mission behind it: Fragile Wings Fierce Hearts was founded with a simple but powerful belief: we can make a difference in the lives of those living with Epidermolysis Bullosa (EB) and we will strive to find a cure. What began as a quiet dream shared by an EB mom among friends has grown into a mission driven movement united by compassion, determination, and hope. Today, Fragile Wings Fierce Hearts brings together families, friends, partners, and supporters who are committed to funding critical research and standing alongside the EB community. Every dollar raised through Fragile Wings Fierce Hearts is donated directly to EB Research Partnership (EBRP), the leading organization accelerating treatments and driving progress toward a cure.

We are looking for a volunteer with Event Videography and Video Production expertise to film our Fragile Wings Fierce Hearts gala in person on February 6, 2027 and provide the following deliverables. The volunteer will:
- Capture comprehensive event footage throughout the evening, including program segments, entertainment, EB families, sponsors, board members, food, décor, and other meaningful moments; ensure clear on-camera audio and separate audio tracks for key speeches and presentations, and deliver all usable raw video and audio files.
- Conduct optional brief interviews with EB families, board members, and supporters on-site and provide raw interview clips alongside event footage.
- Produce a few short, quick-turnaround highlight clips optimized for social media shortly after the event (optional depending on additional volunteer availability), while prioritizing delivery of high-quality master footage for our future use.

Organization Mission

EB Research Partnership was founded in 2010 by a group of parents set out to save their children’s lives along with Jill and Eddie Vedder (Pearl Jam) with one bold audacious goal: cure the devastating and life-threatening genetic rare skin disease epidermolysis bullosa (EB) by 2030 and in the process pioneer an innovative business model to lead the way for 10,000 rare diseases that affect 400 million people.