204 – Mike Graglia of Palo Alto, CA Father of Two & Co-Founder Of The SynGAP Research Foundation

Our guest this week is Mike Graglia of Palo Alto, CA. Mike and his wife, Ashley, are parents to two boys John (3) and Tony (8) who was diagnosed with SynGap 1, a rare genetic disorder. We’ll learn about Mike’s eclectic career including being a Peace Corps volunteer in Namibia, as well as working at: the World Bank, Boston Consulting Group, the Bill & Melinda Gates Foundation, Hewlett Packard Enterprise, New America, and Emerson Collective before jumping in full-time at the SynGAP Research Foundation in a quest to find treatments and a cure for those who diagnosed with SynGap1. It’s a

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194 – Dr. Al Freedman of West Chester, PA, A Psychologist Specializing In Rare Disease & Disability Lost A Son To SMA Recently.

Our guest this week is Al Freedman of West Chester, PA a Psychologist who specializes in counseling families touched by rare disease and disability. Al is a divorced father of two adult children; Cara (21) and Jack (26), who had Spinal Muscular Atrophy (SMA), a rare neuromuscular disorder, leaving him wheel chair and ventilator dependent. David Hirsch recorded this interview with Al in August, 2021, but ivery sadly, Jack passed away in October at age 26. So, David spoke again with Al this week to have Al reflect on the impact Jack had on him, those he met and beyond. We’ll

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193 – Miguel Sancho of Larchmont, NY, An Emmy Award Winning TV Producer, Author & Father Of Two, Including a Son With CGD

Our guest this week is Miguel Sancho, of Larchmont, NY a journalist and an Emmy award winning TV producer. Miguel and his wife, Felicia Morton, have been married for 16 years and are the proud parents of two; Lydia (13) and Sebastian (9), who was diagnosed with CGD, Chronic Granulomatous Disease, a rare genetic disorder in which white blood cells called phagocytes are unable to kill certain types of bacteria and fungi. People with CGD are constantly at risk of developing bacterial and fungal diseases that can be life-threatening. Miguel is also the author of: More Thank You Can Handle: A

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185 – Lenn Boston of Kalamazoo, MI Retired U.S. Navy Chief Petty Officer, Father of Four Including A Child With Angelman Syndrome

Our guest this week is Leonard Boston of Kalamazoo, MI, a retired U.S. Navy Chief Petty Officer, real estate agent, board member of Parent To Parent (P2P) USA, and father of four, including a daughter with Angelman Syndrome. Lenn and his wife, LaTrieva, have been married for 13 years and are the proud parents of four children: Kenyana (31), Ashante (28), Maleek (26) and Chloe(11), who was diagnosed with Angelman Syndrome, a genetic disorder that mainly effects the nervous system. After serving 20 years in the Navy, Lenn became a real estate agent and also serves on the board of Parent

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174 – Jeremy Knakmuhs of Colorado Springs, CO Who Is The Father Of Three Including A Daughter With PFIC Special Fathers Network Dad to Dad Podcas

Our guest this week is Jeremy Knakmuhs of Colorado Springs, CO who is a structural project engineer at CTL Thompson. Jeremy and his wife, Emily, have been married for 8 years and are the proud parents of three children: Colton (6), and three year old twins: Remi and Kennedy, who has PFIC, which is Progressive Familial Intrahepatic Cholestasis, a rare genetic liver disorder that affects infants and children. We’ll hear the Knakmuhs family story and how Jeremy and Emily have navigated the ups and downs of raising three children, including one with special needs. That’s all on this Special Fathers Network

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132 – Casey Parks of Mercer Island, WA Has A Son With CTNNB1 Syndrome, A Rare Genetic Deletion

Our guest on this Special Fathers Network Dad to Dad Podcast is Casey Parks of Mercer Island, WA., who is a deputy prosecuting attorney and father of two children, one of whom, Ford, was diagnosed with CTNNB1 Syndrome, a rare genetic deletion. We’ll hear the Parks family story and all about Casey’s wife Effie who created the Once Upon a Gene Podcast. That’s all on this Special Fathers Network Dad to Dad Podcast. For more information on CTNNB1 Syndrome go to https://www.ctnnb1.org You can check out their Facebook page at: https://www.ctnnb1.org To hear Effie’s podcast and to find out more go to https://effieparks.com Find

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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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