Events

RARE Together Watch Together Film Selections from The Disorder Channel: More than A Quest- Success

September 18, 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. Featuring podcasters Kevin Freiert and Sanath Kumar Ramesh, this evening will feature the following films:

Life & Atrophy directed by Gareth Burghes

After their son, Miles, is diagnosed with Spinal Muscular Atrophy, a devastating neuromuscular disease causing progressive muscle loss, Nikki and Tony seek an experimental treatment to save their son. Featuring Nikki McIntosh as a speaker from the film.

Brick in the Wall directed by Seth Evans & Jordan Danelz

Brick in the Wall follows the life and legacy of Joshua Frase, and his family (Alison and Paul Frase) as they journey to find a cure for his rare disorder, myotubular myopathy (MTM). Through twists and turns, the family finds hope in an unlikely place, a dog named Nibs. That hope spreads to the biomedical research industry and the amazing people and animals that serve research.

Counting Every Second directed by Andrew Pucio

A Love Letter Series film is the story of Hannah Sames. A beautiful, young girl, diagnosed with GAN (Giant Axonal Neuropathy). GAN is a deadly, neurodegenerative rare disease. Hannah’s courageous spirit battles her only enemy – the ticking clock. What happens when the powerful will of a loving family intersects with people that dedicate their lives to scientific discovery? Featuring speaker Lori Sames.