This November, our “We Are APBD” explainer video and our documentary, “Life Through a Lens,” will make their debut on the Disorder Channel.
Earlier this spring, when movie theaters and other entertainment venues around the world closed their doors in an effort to contain the spread of COVID-19, two rare disease advocates, Bo Bigelow and Daniel DeFabio, were forced to readjust.
Bigelow and DeFabio have children living with rare diseases and are the founders of “Disorder: The Rare Disease Film Festival,” which showcases films centered on conditions and topics in the rare disease community. “Life Through A Lens” — our documentary about APBD — was selected for the May 2020 Festival.
With an in-person festival no longer possible, Bigelow and DeFabio shifted their focus from showing films in the theater to bringing them into the home. The result of their effort is the Disorder Channel, a streaming outlet that’s now available on Roku and Amazon Fire TV. The creators say the channel features new films and original videos with a rare disease focus. The channel also includes films that were set to play at this year’s Festival and others that were shown at the Festival in prior years.
Thanks to Bigelow’s and DeFabio’s creative problem solving, our informative APBD videos will be accessible by millions of people around the world who have Amazon Fire and Roku subscriptions.
“Raising the profile of APBD in the public and within the medical community is vital to reducing the 6.8 years-long diagnostic odyssey patients face and to developing treatments and a cure,” shares Emil Weiss founder and co-president of the APBD Research Foundation.
Jeff Levenson, co-president of the foundation, co-producer and director of the PSA and the documentary adds, “Robert’s ability to be optimistic and to see possibility -and humor – in life is inspiring and revelatory. Our hope is that this documentary will empower those living with APBD and allied diseases to harness Robert’s positivity.”
With only 200 diagnosed patients around the world, APBD is an ultra-rare, inborn error of metabolism. It is diagnosed most frequently in people of Ashkenazi Jewish ancestry, although it is pan-ethnic.
Patients begin experiencing symptoms in their 30s, 40s, and 50s, when they’re in the prime of their lives. As the disease progresses, they lose the ability to walk, stand, stay continent, stay awake, perform at work, and socialize. APBD is a devastating, life-changing disease for the patient as well as his/her family.