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The Disorder Channel Films

June 16, 2025
Storytelling Stage
Storytelling Stage (Booth #349)

Unconditional: Raising a Glass Child with a PACS1 Sibling - This film 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. Directed by Jon Dorflinger.

Miss Diagnosis - Award winning filmmaker Tara Rule shares her struggle for 31 years to get her diagnosis of EDS. Ehlers Danlos Syndrome. Directed by Tara Rule.

VHL Alliance: Suellen’s Story - Suellen and her family commemorate her mother losing her battle to Von Hippel-Lindau Syndrome as they work to help cure the disease for the current generation of their family who are affected. Directed by Ilene Sussman.

Menkes Disease: Finding Help & Hope - 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. Directed by Daniel DeFabio.

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