Wednesday Dec 14, 2022
EP10: Menkes Dad Daniel DeFabio on grief in the Marvel Universe and ours as well as the art of storytelling
Content Warning:
Some parts of this discussion may be distressing or trigger difficult thoughts and feelings for some listeners. If you are experiencing grief, sadness, or struggling to cope, help is available. Please reach out to a medical or mental health provider or speak to someone by phone by dialling at 116 123 for the Samaritans UK or dialling 988 in the US mental health support.
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Daniel DeFabio is a Menkes disease Dad, rare disease advocate, and Producer for DISORDER: The Rare Disease Film Festival, among so many other projects! He has a long history of engaging audiences with online content creation. In this episode, we touch on grief, its appearance in the Marvel Universe, and the art of rare disease storytelling. Signalise listeners are also treated with a big announcement for a new show launching in December 2022 on The Disorder Collection channel.
Since his entrance into rare disease life with the birth of his son in 2008, Daniel created the Rare Disease Film Festival with Bo Bigelow and co-hosts Once Upon a Gene TV with host Effie Parks and co-host Bo Bigelow. You can find more content on rare disease parenting, the loss of a child, and more below.
You can learn more about Daniel and his projects on Facebook, Instagram, or find Daniel on LinkedIn.
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Blog Post:
“The evidence of my son’s impact”
Daniel's Disorder Collection Profile: https://www.thedisordercollection.com/danieldefabiospeaker
Once Upon a Gene TV EP5
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