#67 Daniel DeFabio on Disorder: The Rare Disease Film Festival

#67 Daniel DeFabio on Disorder: The Rare Disease Film Festival

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Daniel DeFabio is co-director of Disorder: The Rare Disease Film Festival. This event is a first of its kind showcasing a myriad of films from around the world that address the challenges of life with a rare disease. The film festival has support from some of the leading organizations in rare disease advocacy -- NORD, Global Genes, The Mighty, RDUF and MassBio. The event is going to be in Boston, MA on October 2nd & 3rd, 2017.

Audio clips from the films played on the show include:

  • Menkes Disease: Finding Help & Hope directed by Daniel DeFabio features Mary McDonnell
  • Magic Bracelet directed by Jon Poll (Meet the Fockers) addresses Mitochondrial Disease features J.K. Simmons, Hailee Steinfeld, Bailee Madison 
  • Special Blood directed by Natalie Metzger addresses HAE Hereditary Angiodema
  • This is Michelle directed by Patrice Lighter addresses Epidermolysis Bullosa features William H. Macy.
  • Life & Atrophy directed by Gareth Burghes addresses SMA 
  • Tess is Not Alone directed by Bo Bigelow addresses USP7 mutation

Daniel has also written about the rare disorder Menkes Disease for The Mighty. One of these stories won the 2015 Rare Patient Story Award from Global Genes. He made a 12 minute documentary on Menkes Syndrome narrated by Oscar nominee Mary McDonnell. In 2008 he founded the Ballston Spa Film Festival. He was a pioneer of original content online (now called web series) and co-wrote and co-produced the internet's first animated series. He has created videos and motion graphics for American Cinematographer, PBS, bio-techs, hospitals, TNT's “The Closer” and HBO's “Curb Your Enthusiasm”.

 

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#68 Bo Bigelow on USP7-Related Disorders

#68 Bo Bigelow on USP7-Related Disorders

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