Confessions of a Rare Disease Mama
A Father's Perspective with Rare Disease Dad & Director of Community Engagement for Global Genes, Mr. Daniel DeFabio
Happy (almost) Father's Day to all you incredible Dad-vocates out there. This week I spoke with one exceptional Father, Daniel DeFabio, that saw the injustice of the rare disease world after his son Lucas, was diagnosed with Menkes Disease and decided to take action. Daniel has made a career out of spreading awareness and honoring his son's memory as a rare disease advocate. He co-founded Disorder, the rare disease film festival, as well as the Disorder Channel, is a writer and blogger in residence for Courageous Parents Network, and is the Director of Community Engagement at Global Genes. I truly appreciated how open, honest, and real he was during our conversation. We talk about everything from diagnosis, stages of grief, his career transition to advocacy, how he's making an impact on the rare disease world, what role hope plays in his life, and so much more. Happy listening, friends!
Daniel's social links:
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
Read Daniel's thoughts on hope here.
Learn more about the Disorder Channel here.
Learn more about Global Genes here.
Resources & Links for this episode:
- Buy Soaring Together: Amazon, Barnes & Noble, or locally at Bike Trail Books in Loveland and the Cincinnati Zoo Gift Shop
- Learn more about our brave warriors: saveromanandstella.com
- Support our family: GoFundMe
- Follow us!
- Instagram: @confessionsofararediseasemama
- TikTok: @rare_mama
- Facebook: Jillian Arnold & Confessions of a Rare Disease Mama
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