PODCAST · health
HC&U
by Ben and Lindsey Massengale
HCandU is a podcast dedicated to the metabolic disorder, homocystinuria. This podcast is meant to be a resource for anyone who has (or is a caretaker of someone with) classical homocystinuria, a cobalamin disorder, or severe MTHFR as well as anyone who has been affected by any of the disorders under the homocystinuria umbrella. Topics to be discussed on the show include patient stories, research updates, recipes, and interviews with experts in the field of homocystinuria. Whether you or someone you know were just diagnosed or have been a patient for years, we hope you find this podcast helpful!
Episodes
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HC&U Bite Sized with Dr. Hong Li
HC&U: A Podcast about Homocystinuria and HCU Network America are proud to present a new monthly podcast series featuring quick, informational interviews with experts in the world of homocystinuria. In the fifth installment of HC&U Bite Sized, we talk to Dr. Hong Li, a clinical and biochemical...
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Decentralized Clinical Trials: Travere's HARMONY and COMPOSE Studies (3/3)
Welcome to HC&U, the homocystinuria podcast sponsored by HCU Network America. We hope you enjoy this new, limited series brought to you in conjunction with Science 37 and Travere Therapeutics. This will be a 3 part series focused on decentralized clinical studies (episode 1), the nurse/patient...
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Decentralized Clinical Trials: The Nurse/Patient Experience (2/3)
Welcome to HC&U, the homocystinuria podcast sponsored by HCU Network America. We hope you enjoy this new, limited series brought to you in conjunction with Science 37 and Travere Therapeutics. This will be a 3 part series focused on decentralized clinical studies (episode 1), the nurse/patient...
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Episode 55 with Joseph Coughlin
In the fifty fifth episode of HC&U, we interview Joseph Coughlin. Joseph is dad to classical homocystinuria patient, Matthew. Joseph shares Matthew's story of a late homocystinuria diagnosis and his family's advocacy that followed. Joseph's YouTube channel and TikTok are linked below. You can…
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Decentralized Clinical Trials (1/3)
Welcome to HC&U, the homocystinuria podcast sponsored by HCU Network America. We hope you enjoy this new, limited series brought to you in conjunction with Science 37 and Travere Therapeutics. This will be a 3 part series focused on decentralized clinical studies (episode 1), the nurse/patient...
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Episode 54 with Brittany Hunter
In the fifty fourth episode of HC&U, we interview Brittany Hunter. Brittany is mom to classical homocystinuria patient, Anniston. Brittany shares Anniston's story of her homocystinuria diagnosis through newborn screening and how their family has made the management of homocystinuria a normal part...
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HC&U Bite Sized with Dr. Zohreh Talebizadeh
HC&U: A Podcast about Homocystinuria and HCU Network America are proud to present a new monthly podcast series featuring quick, informational interviews with experts in the world of homocystinuria. In the fourth installment of HC&U Bite Sized, we talk to the Senior Director of the RareX Research...
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HC&U Bite Sized with Dr. Zohreh Talebizadeh
HC&U: A Podcast about Homocystinuria and HCU Network America are proud to present a new monthly podcast series featuring quick, informational interviews with experts in the world of homocystinuria. In the fourth installment of HC&U Bite Sized, we talk to the Senior Director of the RareX Research...
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Episode 53 with Patrick Lynch
In the fifty third episode of HC&U, we interview Patrick Lynch. Patrick is a classical homocystinuria patient. He shares his story of his homocystinuria diagnosis at the age of 9 and some of the struggles he faced as a teenager in regards to treatment adherence. Patrick also talks about how he...
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Clinical Trials Bonus Episode 3: Clinical Trials in Motion
Welcome to HC&U, the homocystinuria podcast sponsored by HCU Network America! We hope you enjoy this three part series, sponsored by Travere Therapeutics. The third and final installment is called Clinical Trials in Motion. Please share the podcast and give us a 5 star rating and review! Email us...
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Clinical Trials Bonus Episode 2: Harmony Global Clinical Trials Live Q and A
Welcome to HC&U, the homocystinuria podcast sponsored by HCU Network America! We hope you enjoy this three part series, sponsored by Travere Therapeutics. The second installment is the Harmony Global Clinical Trials Live Q and A. Please share the podcast and give us a 5 star rating and review!...
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Clinical Trials Bonus Episode 1: Clinical Trials 101
Welcome to HC&U, the homocystinuria podcast sponsored by HCU Network America! We hope you enjoy this three part series, sponsored by Travere Therapeutics. The first installment is called Clinical Trials 101. Please share the podcast and give us a 5 star rating and review! Email us at...
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World Homocystinuria Awareness Day Panel
We hope you enjoy the 2026 World Homocystinuria Awareness Day panel hosted by Ben featuring Jacob, Amy, and Isaac! Thank you to our panel sponsor, Syntis Bio! Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! Check out HCU Network America!...
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Episode 52 with Brandon Tornes
In the fifty second episode of HC&U, we interview Brandon Tornes. Brandon is the dad of Mason who has Cobalamin C. He shares an update on Mason's and his family's journey with Cobalamin C as well as some advice for people in a similar situation. During Lindsey's Low Pro Bitesss, we discuss Mom's...
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HC&U Bite Sized with Brittany Parke
HC&U: A Podcast about Homocystinuria and HCU Network America are proud to present a new monthly podcast series featuring quick, informational interviews with experts in the world of homocystinuria. In the third installment of HC&U Bite Sized, we talk to HCU Network America Research Coordinator…
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Episode 51 with Zamira Castaneda
In the fifty first episode of HC&U, we interview Zamira Castaneda. Zamira is the mother of Luciano who has Cobalamin G. She shares her family's medical journey along with some struggles and triumphs of living with Cobalamin G. During Lindsey's Low Pro Bitesss, we discuss Mom's fried sweet…
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HC&U Bite Sized with Nicolo Betoni
HC&U: A Podcast about Homocystinuria and HCU Network America are proud to present a new monthly podcast series featuring quick, informational interviews with experts in the world of homocystinuria. In the second installment of HC&U Bite Sized, we talk to Nicolo Betoni about his presentation at…
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HC&U Bite Sized with Kristen Skvorak
HC&U: A Podcast about Homocystinuria and HCU Network America are proud to present a new monthly podcast series featuring quick, informational interviews with experts in the world of homocystinuria. In the first installment of HC&U Bite Sized, we talk to Kristen Skvorak about her presentation at...
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Episode 50 With Ruby Jean
In the fiftieth episode of HC&U, we interview Ruby. Ruby is a patient with classical HCU living in Australia. She shares her journey with homocystinuria and goes into detail about her experience with clinical trials. During Lindsey's Low Pro Bitesss, we discuss chili cheese tots. Please share the...
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Episode 49 with Avery Volz
In the forty ninth episode of HC&U, we interview Avery Volz. Avery is a PhD student at Cincinnati Children's Hospital Medical Center (CCHMC)/University of Cincinnati (UC) in Development, Stem Cell, and Regenerative Medicine (DSRM). She is also a patient with classical HCU. She shares her unique...
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Episode 48 with Amy Flanagan
In the forty eighth episode of HC&U, we interview Amy Flanagan. Amy is the mom of Classical HCU patient, Carson. Carson was originally misdiagnosed with Marfan syndrome. Amy shares Carson's and his family's journey to diagnosis with classical homocystinuria including the challenges and struggles...
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Episode 47 with Melanie Colter
In the forty seventh episode of HC&U, we interview Melanie Colter. Melanie is the mom of Classical HCU patient, Masen. Listen along as Melanie gives us an update on Masen's and his family's journey with a late diagnosis of HCU. During Lindsey's Low Pro Bitesss, we talk about vegetarian Irish…
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Episode 46 with Alicia and Miguel Gonzalez
In the forty sixth episode of HC&U, we interview Alicia and Miguel Gonzalez. Alicia and Miguel are the parents of cobalamin C patient, Andrea. Hear their story about their family's journey to diagnoses and the challenges and successes of living with cobalamin C. During Lindsey's Low Pro Bitesss…
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Episode 45 with Tiny and Tomas Devitos
In the forty fifth episode of HC&U, we interview Tiny and Tomas Devitos. Tiny and Tomas are the parents of classical HCU patient, Alexander. Hear their story about their family's journey to diagnoses and the challenges and successes of living with classical HCU. During Lindsey's Low Pro Bitesss…
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Episode 44 with Zara Bono
In the forty fourth episode of HC&U, we interview Zara Bono. Zara is the mother of Severe MTHFR patients, Zoraiz and Areeba. Hear Zara's story about her family's journey to diagnoses and the challenges and successes of living with Severe MTHFR. During Lindsey's Low Pro Bitesss, we talk about...
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Newborn Screening Bonus Episode 2025
In this bonus episode of HC&U, we present Ben's conversation with Erica Wright, a clinical genetic counselor at The Children's Hospital Colorado and Assistant Professor at the University of Colorado Anschutz Medical Campus for Pediatric Clinical Genetics and Metabolism and Greg Bonn, Program...
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Episode 43 with Liz Gonzalez
In the forty third episode of HC&U, we interview Liz Gonzalez. Liz is the mother of classical HCU patients, Everett and Clementine. Liz and I discuss her family's journey to diagnosis and the challenges and successes of living with HCU. During Lindsey's Low Pro Bitesss, we talk about pancake…
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Adulting 101 Bonus Episode
In this bonus episode of HC&U, we present our Adulting 101 panel from September 11, 2025. This was a joint effort between HCU Network America and the MSUD Family Support Group. Gabbi Lewis and Ben represent the HCU community. During Lindsey's Low Pro Snacksss, we talk about pickle salsa. Please...
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Episode 42 with Brittany Parke
In the forty second episode of HC&U, we interview Brittany Parke. Brittany is the mother of cblG patients, Drew and Grayson. Brittany and I discuss her family's journey to diagnosis and the challenges and successes of living with cblG. During Lindsey's Low Pro Bitesss, we talk about taco stuffed...
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Episode 41 with Hannah Llewellyn-Jones
In the forty first episode of HC&U, we interview Hannah Llewellyn-Jones. Hannah is the mother of Olive, a cblG patient living in the UK. Hannah and I discuss Olive's journey to diagnosis and the challenges and successes of living with cblG. During Lindsey's Low Pro Bitesss, we talk about…
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Episode 40 with Rene van Oorschot
In the fortieth episode of HC&U, we interview Rene van Oorschot. Rene is the father of Nico, a classical HCU patient living in Scotland. Rene and I discuss Nico's journey to diagnosis and the challenges and successes of living with HCU. During Lindsey's Low Pro Bitesss, we talk about jackfruit...
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Newborn Screening Bonus Episode
We hope you enjoy Ben's interview with Allison Herrity, senior policy analyst at NORD, about Newborn Screening in America and what the path forward for NBS looks like! In Lindsey's Low Pro Snackssss, we talk about Simply Nature fruit strips. P.S. Thanks to everyone who voted in our poll for…
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Episode 39 with Michael Stevenson
In the thirty ninth episode of HC&U, we interview Michael Stevenson. Michael is a classical HCU patient living in Australia. Michael and I discuss his journey to diagnosis and his brother, Phillip's, instrumental role in the overall understanding of HCU. During Lindsey's Low Pro Bitesss, we talk...
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Bonus Episode 2025 WHAD Panel
We hope you enjoy the 2025 WHAD panel featuring Erica Arnaud, Brandon Tornes, and Brittany Hunter hosted by Ben. Thank you to our panel sponsor, Syntis Bio! Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! Check out HCU Network America!...
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Episode 38 with Andreana Lanpouthakoun
In the thirty eighth episode of HC&U, we interview Andreana Lanpouthakoun. Andreana is a Cobalamin G patient. Andreana and I discuss her journey to diagnosis including some brain and nervous system difficulties experienced after her late onset Cobalamin G. During Lindsey's Low Pro Bitesss, we…
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Episode 37 with Jessie and Trace Fordham
In the thirty seventh episode of HC&U, we interview Jessie and Trace Fordham. Trace is a Cobalamin C patient. Trace, his mom, and I discuss Trace's journey to diagnosis including some brain and nervous system difficulties. During Lindsey's Low Pro Bitesss, we talk about jackfruit pot roast.…
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Episode 36 with Dr. Curtis Coughlin
In the thirty sixth episode of HC&U, we interview Dr. Curtis Coughlin, genetic counselor, PhD researcher, and associate professor at the University of Colorado. We discuss the importance of genetic testing and the role it plays in metabolic disorders. During Lindsey's Low Pro Bitesss, we talk…
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Bonus Episode with Joy Brown
In this bonus episode of HC&U, we interview Joy Brown whose daughter, Ari, is a classical HCU patient. We discuss Ari's homocystinuria journey and the implications of a late diagnosis. During Lindsey's Low Pro Snacksss, we talk about Trader Joe's Grainless Tortilla Chips. Please share the podcast...
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Episode 35 with Yasenia Castro
In the thirty fifth episode of HC&U, we interview Yasenia Castro whose sister, Enelcita,is an HCU patient. We discuss Enelcita's diagnosis journey and the behavioral symptoms that arose throughout this time. We also talk about the progress Enelcita has made since her diagnosis. During Lindsey's…
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Episode 34 with Laurie Bonucci
In the thirty fourth episode of HC&U, we interview Laurie Bonucci whose son, Joe, is a Classical HCU patient. We discuss Joe's delayed diagnosis and the impact that had on his life. We also talk about the awesome successes Joe has had throughout his HCU journey. During Lindsey's Low Pro Bitesss…
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Episode 33 with Holly Fulginiti
In the thirty third episode of HC&U, we interview Holly Fulginiti whose husband Chris was diagnosed with homocystinuria. We discuss the Chris's long journey to a diagnosis and the role Holly played in advocating for Chris. During Lindsey's Low Pro Bitesss, we talk about a great Thanksgiving side,...
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HCU Awareness Month Bonus Episode
In this bonus episode of HC&U, we talk with Kristen Skvorak, a preclinical consultant focused on rare diseases, about drug development, research, and potential treatment options for HCU. We would like to give a special thanks to Syntis and Iditarod! During Lindsey's Low Pro Snacks, we discuss...
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Episode 32 with Valerie Mayorga, Vicente Jimenez, and Victor Jimenez
In the thirty second episode of HC&U, we interview Valerie Mayorga, Vicente Jimenez, and Victor Jimenez, 3 adult patients living with Classical HCU. We discuss the challenges of growing up with HCU, family planning with HCU, and give some advice to younger patients. During Lindsey's Low Pro...
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Newborn Screening Awareness Month Bonus Episode
In this bonus episode of HC&U, we share patient and caregiver submitted audio clips of successes with HCU. We hope this episode uplifts and encourages you! Special thanks to Joanna, Clara, Jacob, and Melanie! During Lindsey's Low Pro Snacks, Solely organic mango and guava gummies. Please share…
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Episode 31 with Dylan Simon and Dr. Neena Champaigne
In the thirty first episode of HC&U, we interview Dylan Simon, Senior Director of Policy at EveryLife Foundation and Dr. Neena Champaigne, Division Chief of Pediatric Genetics at the Medical University of South Carolina. In honor of Newborn Screening Awareness Month, our coversation focuses on…
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Episode 30 with Dr. Stephanie Hitti
In the thirtieth episode of HC&U, we interview Dr. Stephanie Hitti, a neuropsychology postdoctoral fellow at Children's Hospital Colorado. We discuss IEPs, 504s, IHPs, and accomodations that could be beneficial for children navigating school with HCU. During Lindsey's Low Pro Bitesss, we talk…
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Episode 29 with Brandon Tornes
In the twenty ninth episode of HC&U, we interview Brandon Tornes, father to Mason, a patient diagnosed Cobalamin C. We discuss Mason's journey with Cobalamin C and vision loss. We talk about coping with vision deficits in relation to school, extracurriculars, and everyday life. During Lindsey's…
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Episode 28 with Gabbi Lewis
In the twenty eighth episode of HC&U, we interview Gabbi Lewis who is an HCU patient, advocate, and recent college graduate. We discuss Gabbi's journey with HCU and scoliosis. We also talk about navigating college life with HCU. During Lindsey's Low Pro Bitesss, we enjoy some vegetarian tostadas....
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Episode 27 with Alex Orange Drink
In the twenty seventh episode of HC&U, we interview Alex Orange Drink who is a musician/songwriter and adult HCU patient and advocate. We discuss the mental health challenges that growing up with a rare disorder presents and how we have coped over the years. We miss out on Low Pro Bitesss in this...
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Bonus Episode with Melanie Colter, Shaina Shapiro, and Julie Sullivan
In this bonus episode of HC&U, we present HCU Network America's live panel discussion called "Navigating the Maze" for World Homocystinuria Awareness Day. We discuss the complex journey of diagnosis and treatment with Melanie, Shaina, and Julie. We wrap up with Lindsey's Low-Pro Bitessss. We…
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ABOUT THIS SHOW
HCandU is a podcast dedicated to the metabolic disorder, homocystinuria. This podcast is meant to be a resource for anyone who has (or is a caretaker of someone with) classical homocystinuria, a cobalamin disorder, or severe MTHFR as well as anyone who has been affected by any of the disorders under the homocystinuria umbrella. Topics to be discussed on the show include patient stories, research updates, recipes, and interviews with experts in the field of homocystinuria. Whether you or someone you know were just diagnosed or have been a patient for years, we hope you find this podcast helpful!
HOSTED BY
Ben and Lindsey Massengale
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Frequently Asked Questions
How many episodes does HC&U have?
HC&U currently has 75 episodes available on PodParley. New episodes are automatically indexed when they're published to the podcast feed.
What is HC&U about?
HCandU is a podcast dedicated to the metabolic disorder, homocystinuria. This podcast is meant to be a resource for anyone who has (or is a caretaker of someone with) classical homocystinuria, a cobalamin disorder, or severe MTHFR as well as anyone who has been affected by any of the disorders...
How often does HC&U release new episodes?
HC&U has 75 episodes. Check the episode list to see recent publication dates and frequency.
Where can I listen to HC&U?
You can listen to HC&U on PodParley by clicking any episode. We provide an embedded audio player for direct listening, and you can also subscribe via your preferred podcast app using the RSS feed.
Who hosts HC&U?
HC&U is created and hosted by Ben and Lindsey Massengale.
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