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.org To find out about

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020 – Gene Andrasco Tells of Raising a Daughter With Alternating Hemiplegia a Rare Neurological Disorder.

Meet Gene Andrasco. Gene and his wife Kelley are the proud parents of 2 children, 18 year-old Ryan and 17 year-old Kiley who has been diagnosed with Alternating Hemiplegia of Childhood, or AHC. In this Special Fathers’ Network Podcast, we’ll hear the Andrasco family story, how they’ve dealt with Kiley’s rare neurological disorder and how they’ve tried to help other people who have the same disorder. That’s all on this edition of the Special Fathers Network Podcast. Transcript: Dad To Dad 20 – Gene Andrasco Tells of Raising a Daughter With Alternating Hemiplegia a Rare Neurological Disorder.   Tom Couch:

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084- Special Moments of the Dad to Dad Podcast

We’ve talked to over 80 Dads in the Dad to Dad podcast, presented by the Special Fathers Network, and in this episode we present a “greatest hits” version of the podcast. You’ll hear many fathers chiming in on why they joined the Special Fathers Network and why being a father of a kid with special needs is so important to them.  Transcript: Dad to Dad 84- Special Moments of the Dad to Dad Podcast Special Dad: I tell people that one of the blessings of having a son with autism, I’m the only dad. I know who’s 25 year old

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072 – Shane Sondergeld, A Doctor From Down Under Whose Son Has 4Q Deletion Syndrome

In this Dad to Dad podcast host David Hirsch talks to Shane Sondergeld, a doctor from Brisbane, Australia. Shane is a father of three children including William, who was diagnosed with 4Q deletion syndrome, a rare genetic disorder. Shane tells the Sondergeld family story and how having a child with a disability is truly a wonder. That’s all on this Dad to Dad podcast.  Transcript: Dad to Dad 72 – Shane Sondergeld, A Doctor From Down Under Whose Son Has 4Q Deletion Syndrome Shane Sondergeld: Having a child with a disability is not a negative. There is just so much

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071 – John Crowley Saved His Kids’ Lives By Finding a Cure to Pompe Disease

Meet John Crowley, a special father of three kids with special needs. Two of those children have a rare genetic disorder called Pompe disease. John and his wife Aileen were told that Meghan and Patrick would not live very long. So, they took matters into their own hands and helped develop a drug that successfully treats the disorder. They formed a successful RX company, Amicus, whose mission is to find treatments for rare diseases. Their story was told in a book, a movie starring Harrison Ford and by the President of the United States in a joint session of congress. And

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061 – Jason Lehmbeck’s son Noah has Fox-G1, a rare genetic disorder.

On this Dad to Dad podcast host David Hirsch talks to Jason Lehmbeck a father of three children, including Noah, who was diagnosed with Fox G1, a rare genetic disorder. We’ll hear about Jason’s family and his career, including the founding of team Special X, helping parents get the best care for their children with special needs. That’s all on this Dad to Dad podcast, presented by the Special Fathers Network.  Transcript: Dad to Dad 61 – Jason Lehmbeck’s son Noah has Fox-G1, a rare genetic disorder. Jason Lehmbeck: Have a 911 call list when you’re going through these darker

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058 – Bob Mendez’ son Robert was born with no arms and no legs and is a varsity high school football coach.

On this Dad to Dad podcast we hear the story of a boy who was born with no arms and no legs, who went on to become an inspiring and successful high school varsity football coach. Host David Hirsch talks with Coach Mendez’s father, Bob and hears the story of how young Robert was born with an extremely rare condition that currently affects around 100 people globally. Transcript: Dad to Dad 58 – Bob Mendez’ son Robert was born with no arms and no legs and is a varsity high school football coach. Bob Mendez: At this time, I just

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054 – Rich Gathro, father of two young adults, including son, Will, who was born with a rare genetic disease, Schizencephaly.

In this Dad to Dad Podcast we meet Rich Gathro. Rich and his wife Kathy are parents of two young adults, one of whom, Will, was born with a rare birth defect, Schizencephaly. We’ll hear the Gathro family story including how Will loves sports and ESPN. Transcript: Dad to Dad 54 – Rich Gathro, father of two young adults, including son, Will, who was born with a rare genetic disease, Schizencephaly. Rich Gathro: We need to invite people into our lives and not be embarrassed or feel shame about our child. And the best advice we received was pushing him.

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051 – Bo Bigelow, father of two, including a child with Autism and USP7, a rare gene mutation.

In this Dad to Dad Podcast host David Hirsch talks with special father Bo Bigelow, a lawyer, cofounder of Disorder: A rare film festival and father of two, including Tess, who has a rare disease related to the mutation of the USP 7 gene. Bo is also the host of the podcast Stronger Every Day, documenting his journey as Tess’ parent. He’s our guest today on the Dad to Dad Podcast. Transcript: Dad to Dad 51- Bo Bigelow, father of two, including a child with Autism and USP7, a rare gene mutation. Bo Bigelow: And I create this blog post

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