219 – Jessica & Chris Patay of Rancho Palos Verdes, CA Parents of Three Including A Son With Prader-Willi Syndrome

Our guests this week on the SFN Dad To Dad Podcast are Jessica & Chris Patay of Rancho Palos Verdes, CA. The Patays have been married for 25 years and are proud parents of three children: Luke (21), Kate (16), and middle child Ryan (18) who was born with a rare genetic disorder known as Prader-Willi Syndrome. We’ll learn about the Patay family journey, Prader-Willi Syndrome and how Jessica started We Are Better Together, a non profit organization that provides respite, community, and resources for mothers caring for children of any age with disabilities, unique needs, or other medical or mental

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216 – Sanath Kumar Ramesh of San Jose, CA Father of a Son With SSMD and Co-Founder of the Open Treatment Foundation

Our guest this week is Sanath Kumar Ramesh of San Jose, CA, IL, the father of a son with a super rare disease, a successful tech executive and co-founder of the Open Treatment Foundation. Sanath and his wife, Ramya, have been married for 7 years and are the proud parents of Raghav, who is 3 and was diagnosed with SSMD or Sedaghatiantype Spondylo Metaphyseal Dysplasia an extremely rare progressive disease. Sanath is very open and transparent about his early denial. And we learn about Sanath’s efforts to create the Open Treatment Foundation, a non-profit dedicated to creating a software platform that

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215 – Jim Mullen A Disabled Chicago Police Officer, Reflects On Being A Ventilator Dependent Quadriplegic The Past 25 Years

Our guest this week is Jim Mullen, a disabled Chicago Police Officer who was shot and catastrophically injured in the line of duty, leaving him a ventilator dependent quadriplegic. We’ll hear how Jim’s life has changed, how his injury has affected him, his wife and his daughter (who was only 7 months old at the time), about his hobby of buying and selling vintage muscle cars, how he has started marketing and selling his mother’s delicious apple sauce recipe through Mullen’s Food Company, now available at Amazon, Walmart and other national retailers. It’s a fascinating and uplifting story about gratitude and

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214 – Toby Brown & Jesse Hohn of Colorado Are Two Dads Who Each Have Children With Shwachman-Diamond Syndrome

Our guests this week are Toby Brown of Colorado Springs and Jesse Hohn of Littleton, CO. Toby and his wife, Angela Bird, have been married for 15 years and are the proud parents of two children; Kavan (19) and Anabelle (17). Jesse and his wife, Felima, have been married for 23 years and are the proud parents of three children: Ethan (21), Arianna (18) and Sadie (14). Four of their five children have Shwachman-Diamond Syndrome (or SDS), a rare genetic disorder that affects many parts of the body, particularly the bone marrow, pancreas and skeletal system. We learn about how Toby

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206 – Chris Velona of North Los Angeles, Father of Two, Including a Son With Batten Disease & Founder of Project Sebastian

Our guest this week is Chris Velona of North Los Angeles, CA. Chris and his x-wife, Teresa, are the proud parents of two boys; Gage (16) and Sebastian (18), who was diagnosed with Batten Disease CLN8, a rare neurodegenerative disorder. We’ll learn about Chris’ journey, which includes his own battle with alcoholism, shouldering the Batten Disease diagnosis, and creating Project Sebastian, a non-profit to support families touched by Batten Disease and rare disease. We also learn about a number of organizations that have played an influential role in their lives, including: Charlotte & Gwyneth Gray Foundation, the Batten Disease Support &

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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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196 – Spela Mirosevic of Ljubljana, Slovenia, Co-Founder Of The CTNNB1 Foundation, Mother of Two, Including A Son With CTNBB1

Our guest this week is Spela Mirosovic. who is a psychotherapist and biopsychologist, working as a researcher at the Medical University Ljubljana. Her work is focused on exploring unmet needs of cancer survivors and teaching mindfulness programs. Spela is also a mother to 2-year-old Urban who was diagnosed with CTNNB1, a rare autosomal genetic disorder that affects an estimated 1 out of 50,000 children worldwide. Spela is also co-founded and president of the CTNNB1 Foundation created to help find a cure for this debilitating syndrome. We’ll hear Spela’s story and much more on this Special Fathers Network Dad to Dad Podcast.

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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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188 – Tom D’Amato of St. Charles, IL, A Patent Advocate At Horizon Therapeutics, Serving Those With Special Healthcare Needs

Our guest this week is Tom D’Amato of St. Charles, IL who is a Patient Advocate at Horizon Therapeutics, a company dedicated to delivering medicines for rare, autoimmune and severe inflammatory diseases. Tom and his wife, Ashley, have been married for 13 years are the proud parents of three, including two of whom have special healthcare needs. Callie has a rare kidney disease, and Brody has Periodic Fever Syndrome, one of only 700 cases worldwide. Tom also reflects on being diagnosed with Multiple Sclerosis and his own treatment regimen. We’ll hear all about that and more on this Special Fathers Network

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184 – Agust Kristmanns of Reykjavik, Iceland, Board Member of Einstokborn, Father of 3, Including a Son with 2Q37 Deletion Syndrome

Our guest this week is Agust Kristmanns, of Reykjavik, Iceland an electrician with three children, including middle child Ingi (20) who was diagnosed with 2Q37 Deletion Syndrome, a rare chromosome condition affecting an estimated 300 people in the world. Because of Ingi’s late diagnosis, at age 11, he was denied access to resources, which prompted the family to sue the education ministry. We’ll hear Agust’s story including his effort to start a Dads Meetup Group in Iceland. It’s a unique tale and one you’ll enjoy on this Special Fathers Network Dad to Dad Podcast. Show Links:Unique Children of Iceland. (Einstokborn) – https://www.einstokborn.is/is/english

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175 – Dr. Harsha Rajasimha, Founder of Jeeva Informatics, Lost A Child To Edwards Syndrome (AKA Trisomy 18) Shortly After Birth

Our guest this week is Dr. Harsha Rajasimha of Herndon, VA who is the father of three as well as CEO and Founder of Jeeva Informatics, a human-centric software as a service, also known as SaaS, enabling clinical research at scale. Harsha and his wife, Ashwini, have been married for 16 years and are the proud parents of three daughters: Amulya (14), Mytri (7) and middle daughter Kahushi who, very sadly, died in 2012, shortly after birth due to Edwards Syndrome, also known as Trisomy 18, which is a rare congenital disorder. Harsha is also founder of Indo-US Organization For Rare

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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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171 – Dan Habib of Concord, NH, Father of a Son with GNAO1 & Award-Winning Nationally Recognized Documentarian

Our guest this week is Dan Habib, an outspoken advocate for the disabled, a gifted photojournalist and award winning documentarian. One of those documentaries is “Including Samuel” which profiles his 21 year old son, Samuel, who was diagnosed with GNAO1, a rare neurodevelopment disorder. Other award winning films include: “Mr. Connolly Has ALS” and “Intelligent Lives.” We’ll hear about Dan’s advocacy for those touched by disability, about his family, the documentaries as well as how Samuel continues to thrive and inspire, all on this Special Fathers Network Dad to Dad Podcast. LinkedIn – https://www.linkedin.com/in/danhabib/ Email – dhabib@wihd.org Dan’s TedX Talk: “Disabling Segregation” – https://www.youtube.com/watch?v=izkN5vLbnw8

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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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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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