# Daniel Defabio
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Pain Points on the Disorder Channel with Daniel DeFabio and Bo Bigelow -This Festivus, Let the Airing of Grievances Begin
ONCE UPON A GENE - EPISODE 212
Special pop up episode from our friends Daniel DeFabio and Bo Bigelow from the Disorder Channel - Pain Points
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Why Flying with a Wheelchair Is a Civil Rights Issue
Despite existing laws and regulations intended to protect the rights of people with disabilities to fly on airlines, travelers with wheelchairs and medical equipment face obstacles to enjoying the freedom of movement others take for granted. Neglectful handling of equipment, lack of training, and f…
"Parenting a Dying Child" | Life After Menkes Diagnosis
Daniel DeFabio turned his personal tragedy into a mission to support others. After losing his son Lucas to Menkes syndrome at just 11 years old, Daniel dedicated himself to the rare disease community, now serving as the Director of Community Engagement for Global Genes.
Learn about Lucas’s journey…
Menkes Disease With Daniel DeFabio From New York
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Nicknamed Kinky Hair Syndrome Menkes Syndrome is tested for in cases where the child isn't getting enough copper which can cause hair loss. It is often the first sign. It isn't on the newborn screening currently, but their are clinical trials for it. Go to clinicaltrials.gov for…
The Eight Different Types of Advocacy with Director of Community Engagement of Global Genes, Daniel DeFabio
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In this episode I welcome back (for a repeat appearance!) Director of Community Engagement of Global Genes, Mr. Daniel DeFabio. During our conversation, we dive deep into the many facets of advocacy that we, as rare parents and caregivers deal with. Daniel shares his vast knowledge a…
Charging the Rare Community with The Disorder Channel Co-Founder, Global Genes Director of Community Engagement, Menkes Syndrome Advocate and Rare Dad Daniel DeFabio
RARE MAMAS RISING- EPISODE 24
Charging the Rare Community with The Disorder Channel Co-Founder, Global Genes Director of Community Engagement, Menkes Syndrome Advocate & Rare Dad Daniel DeFabio
At the age of 12 months, Daniel's first child Lucas was diagnosed with the rare disease Menkes Syndr…
S2:E12 Daniel DeFabio | Menkes Disease
We're overjoyed to welcome Daniel DeFabio to the studio this week. We spoke about his son Lucas, who had Menkes Disease, as well as about the stages of grief, paying it forward, the work he's doing at Global Genes and the creation of The Disorder Channel.
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Episode 33: Daniel DeFabio | Menkes Disease
We're overjoyed to welcome Daniel DeFabio to the studio this week. We speak about his son Lucas, who had Menkes Disease, and about the stages of grief, paying it forward, the work he's doing on Global Genes and the creating of The Disorder Channel.
Menkes Disease letters + numbers: ATP7A
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Episode 48: Daniel DeFabio - Menkes Disease
In this heartfelt episode, Daniel opens up about his journey with his son, Lucas, who was diagnosed with Menkes disease, a rare genetic disorder. Daniel shares the emotional challenges, personal growth, and love that shaped his family's experience. He discusses the need to adjust expectations as a …
Creative Fundraising in the Rare Disease Community – Global Genes Panel Recording
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In this special episode of Confessions of a Rare Disease Mama, I'm sharing the live audio from a panel I had the honor of moderating at the Global Genes Rare Advocacy Exchange. This conversation dives into the power of creative fundraising—something so many of us in the rare disease …
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