RARE Together Watch Together Film Selections from The Disorder Channel: Just Diagnosed Rare
September 16, 2020
Grab some popcorn and join us for three engaging evenings on resilience, inspiration, dedication, hope and courage with short films and discussions curated in partnership with The Disorder Channel! Each night we will host patients and caregivers featured in each film to provide insight into their inspiring journeys, simulcast over global social networks, with live chat and interactions with key figures from the documentary short films. Moderated by podcasters Kyle Brant and Sean Baumstark of 2 Disabled Dudes, this evening will feature the following films:
Hope for Haley directed by Richard Krisher
This film tells the story of Haley Thelen, a sweet and determined two-year-old living in the Pittsburgh area. Haley is diagnosed with Bosch-Boonstra-Schaaf Optic Atrophy Syndrome (BBSOAS) Haley’s parents, Melissa and Jeff, detail the struggles living with disease from the perspectives of Haley and themselves, ultimately finding triumph in the situation through the NR2F1 foundation and through the many “inchstones” they see through Haley’s journey.
Menkes Disease: Finding Help & Hope directed by Daniel DeFabio
Featuring: Daniel DeFabio
Academy Award nominee Mary McDonnell narrates this look at a rare fatal genetic disorder called Menkes Disease. It prevents boys from metabolizing copper. Boys must get treatment in the first ten days of life in order to have long and relatively normal lives. If the disease is not detected and treated that early their lives are much shorter and far from normal. This short documentary aims to explain some of the basics of the disease and treatment but also provide context with examples from three families across the globe showing that there is life after this terrible diagnosis. And that life is more joyful and hopeful than you might expect.
Foundations of Rare: SynGAP Research Fund directed by Bo Bigelow
Featuring: Ashley Evans
What if there’s no organization funding the research you need for your child? You start your own. Combining their backgrounds in private equity and grants, Mike and Ashley build SynGAP Research Fund from the ground up, to help their son Tony.
Tess is not Alone: A USP7 Story directed by Bo Bigelow
A family seeks a diagnosis for their daughter Tess on the internet. They discover she is one of eight known cases in the world of USP7. Next, they establish a foundation and locate dozens more facing the same rare disease.