We have so many great films on The Disorder Channel that show the patient experience with rare disease(s).
Here’s what you watched the most in 2021.
1 Life & Atrophy - 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.
2 THE FACES OF LAFORA - One family decides not to stop until Lafora disease (the most rare epilepsy) is erased from the face of the Earth. The Gajic family from Bosnia and Herzegovina makes the impossible, possible. in order to save the lives of their children, on the other side of the world, in Canada, professor Minassian and his team of researchers are trying to find a cure for this deadly disease.
3 My Turn - Former professional hockey star Scott Matzka grapples with ALS and plans for the remainder of his life while relentlessly advocating to find a cure for the terminal disease. Scott Matzka was in peak physical condition, and enjoyed a 13 year career as a professional hockey player for the Cardiff Devils, Grand Rapids Griffins, Cleveland Barons, Atlantic City Boardwalk Bullies, and Kalamazoo Wings.
4 Unconditional - “Unconditional, Raising a Glass Child with a PACS1 sibling” introduces the Poague Zellinger family who are facing PACS1 syndrome which affects their five year old son Finn. The phrase glass child refers to a sibling who might be neglected or given less attention because their brother or sister has more intense or dramatic needs. This is not only due to rare disease but that’s a striking example.
5 Counting Every Second - Counting Every Second, 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?