68: Rare Stories with Daniel DeFabio

Daniel reached out to me to be a guest on the show as he had listened in to a few episodes and also really believes in the power of sharing stories to offer guidance and hope for others.

 When I heard his story about his son, I knew I had to share it!

 At the age of 12 months Daniel’s first child Lucas was diagnosed with the rare disease Menkes Syndrome.  After adjusting his expectations of what raising a child might look like Daniel began to tell Lucas’ story with a short documentary.  That film led to Daniel co-founding DISORDER: The Rare Disease Film Festival and later the Disorder Channel, both dedicated to spreading awareness for patient families facing any of the more than 7,000 rare diseases.

 One of Daniel’s stories about Lucas won the 2015 Rare Patient Story Award from Global Genes.  His award winning 12-minute documentary on Menkes Syndrome is 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 marketing materials for American Cinematographer, PBS, RightRice, bio-techs, hospitals , most major movie studios, TNT’s “The Closer” and HBO’s “Curb Your Enthusiasm” among others .  He currently works as Global Genes’s Associate Director of Community Engagement.

 Some key points from our interview:

·        How he and his wife where scared when they initially got their son’s diagnosis

·        How going through this process, he has developed more compassion and understanding for others

·        How he’s passionate about sharing Lucas’ story to help others to offer hope

·        How he recognises that whatever you are going through, that it’s important to find your tribe for support

·        How he recognises that even though there were challenging times parenting a child with a rare disease, his son ultimately brought him more joy than pain

 You can watch his documentary here https://vimeo.com/120211522

And you can get more information across all social media platforms here:

https://www.facebook.com/rarediseasefilmfestival
https://www.instagram.com/disorderrarediseasefilms/
https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/
https://twitter.com/DisorderRare

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"Unbroken: Healing Through Storytelling" features  individuals who have all triumphed after adversity and have not just bounced back in life, but forward and are now making a difference for others.

You can find out more about Madeleine, her story and her memoir, Unbroken,  from her website: https://madeleineblack.co.uk/

Watch edited highlights on YouTube:
https://www.youtube.com/c/MadeleineBlackUnbroken

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