116 – Daniel DeFabio Part 2 – Co-Founder of DISORDER: The Rare Disease Film Festival, Reflects On Losing A Son To Menkes Disease

On this Special Fathers Network Dad to Dad podcast It’s the conclusion of host David Hirsch’s conversation with multi media producer, director and marketer, Daniel DeFabio. Daniel and his wife Tina lost their oldest son Lucas (11) just months ago to Menkes Disease, a very rare genetic disorder. Daniel along with fellow SFN Mentor Father Bo Bigelow (SFN D2D #51) are co-founders of DISORDER: The Rare Disease Film Festival. It’s an emotional story that we’ll hear in two parts on the Special Fathers Network Dad to Dad podcast. This is part two. To find out about Menkes Disease go to: https://themenkesfoundation.orgTo find

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115 – Daniel DeFabio Co-Founder of DISORDER: The Rare Disease Film Festival, Reflects On Losing A Son To Menkes Disease

In this Special Fathers Network Dad to Dad podcast host David Hirsch talks with multi media producer, director and marketer, Daniel DeFabio. Daniel and his wife Tina lost their oldest son Lucas (11) just months ago to Menkes Disease, a very rare genetic disorder. Daniel along with fellow SFN Mentor Father Bo Bigelow (SFN D2D #51) are co-founders of DISORDER: The Rare Disease Film Festival. It’s an emotional story that we’ll hear in two parts on the Special Fathers Network Dad to Dad podcast. This is part one. To find out about Menkes Disease go to: https://themenkesfoundation.orgTo find out about DISORDER

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109 – Brian & Allen Lynch, Medal Of Honor Recipient, Reflect On Raising A Child With A Super Rare Genetic Disorder

This is the Special Fathers Network Dad to Dad Podcast. When we say Dad to Dad that’s exactly what we have today, because David Hirsch is talking to special father Brian Lynch and his father Allen Lynch. Brian’s daughter Cailinn was diagnosed early in her life with a rare chromosome disorder, while Brian’s father Allen is one of only 80 living recipients of the Medal of Honor. It’s an intriguing conversation between two special dads. Show Links: AJ Lynch Foundation – https://ajlynchfoundation.orgKaty’s Kloset – http://www.teamupwithfamilies.org/katys-kloset/ Children’s Hospital Wisconsin – https://childrenswi.org Illinois Fatherhood Initiative – www.4fathers.org  Special Fathers Network – https://21stcenturydads.org Transcript:  Dad to Dad 109 Brian & Allen

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080 – Steve Mogul, Father of Two Daughters, Both with Very Rare Genetic Disorders

On this Special Fathers Network Dad to Dad podcast, host David Hirsch speaks with special father Steve Mogul, a financial advisor with UBS Financial Services and a father of two children who both have very rare developmental disorders. Hayley, is only one of 19 in the world who has a rare form of Smith–Magenis Syndrome. Bari, is one of only 19 in the world who have a mutated GRIN2B gene. It’s a very unique situation and Steve spells out the challenges that his family faces. He also offers other parents of kids with special needs some truly insightful advice. That’s all

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