New Kickstarter Campaign: Film to Capture the Personal Story behind a Rare Disease

Award-winning filmmakers Allen Moore and Kori Feener today announced the launch of a Kickstarter campaign for a new documentary titled Bea, which will chronicle the life of a girl from San Carlos with an extremely rare disease and illustrate the importance of family advocacy. The crowd-funding campaign will finance the production of this documentary and enable this family’s unique story to be captured on film.

In the U.S., a disease is considered rare if it affects fewer than 200,000 Americans. Many are difficult to diagnose and even more difficult to treat. Hugh Rienhoff knows this first hand. His daughter Beatrice (Bea for short) has a disease that is so rare, she is the only person in the world known to have it. In a search for answers, Hugh – a clinical geneticist – has devoted his time to exploring the genetic variation that causes her condition, often being referred to as a “biological outlaw” for his unprecedented approach.

This new film aims to share the Reinhoff’s compelling story of science and support. It will follow their journey for more than three years, as Bea matures and new questions arise about the potential impact of her disease.

“Bea is an inspiring coming-of-age film about living with a rare disease and the importance of family advocacy,” co-director and producer Allen Moore explained. “We’ll be capturing both the challenges and achievements that the Rienhoff’s face as Bea grows up.”

“Bea is a rare disease patient but she is also a charming, violin-playing, theatre-performing tomboy,” Kori Feener added. “Documenting her experience is a privilege and we look forward to sharing it with the world once the film is complete.”

Moore and Feener invite everyone to help bring this film to fruition through the Kickstarter campaign. Backers will have the opportunity to skype with the filmmakers, receive limited edition photo prints, and view advanced edits of the film, among other benefits. The campaign deadline is February 28, which is also Rare Disease Day – an annual observance that aims to raise awareness of rare diseases and their impact.

For more information about Bea and to contribute, please visit the Kickstarter campaign webpage, which is accessible here online. You can also follow @BeaTheFilm on Twitter for additional updates.