Podcast
HC&U
Hosted by Ben and Lindsey Massengale · EN
HCandU is a podcast dedicated to the metabolic disorder, homocystinuria. This podcast is meant to be a resource for anyone who has HCU or has been affected by HCU. 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!
10episodes
Episodes
Newest firstAll episodes
Clinical Trials 101 Bonus Episode
4d ago00:59:25Tap to summarizeWelcome 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 podcast@hcunetworkamerica.org! Check out HCU Network America! Check out Travere Therapeutics! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HCU Network America on Twitter What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know through the Homocystinurias Data Collection Program powered by Rare-X! Share your NBS story with HCUNA! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u
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World Homocystinuria Awareness Day Panel
1w ago01:05:37Tap to summarizeWe 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 podcast@hcunetworkamerica.org! Check out HCU Network America! Check out Syntis Bio! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HCU Network America on Twitter What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know through the Homocystinurias Data Collection Program powered by Rare-X! Share your NBS story with HCUNA! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u
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Episode 52 with Brandon Tornes
2w ago00:25:29Tap to summarizeIn 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 fried sweet potatoes. Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HCU Network America on Twitter Mason's Story Brandon's First Interview on Spotify! What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know through the Homocystinurias Data Collection Program powered by Rare-X! Share your NBS story with HCUNA! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u #cobalamin #severemthfr
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HC&U Bite Sized with Brittany Parke
3w ago00:10:02Tap to summarizeHC&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 and mom of cblG patient Grayson, Brittany Parke about her presentation for the Society of Inborn Metabolic Disorders. Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HCU Network America on Twitter What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know through the Homocystinurias Data Collection Program powered by Rare-X! Share your NBS story with HCUNA! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u #cobalamin #severemthfr
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Episode 51 with Zamira Castaneda
May 2900:37:32Tap to summarizeIn 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 potatoes. Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HCU Network America on Twitter Luciano's Story What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know through the Homocystinurias Data Collection Program powered by Rare-X! Share your NBS story with HCUNA! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u #cobalamin #severemthfr
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HC&U Bite Sized with Nicolo Betoni
May 2400:06:14Tap to summarizeHC&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 the American Academy of Neurology conference. Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HCU Network America on Twitter What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know through the Homocystinurias Data Collection Program powered by Rare-X! Share your NBS story with HCUNA! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u #cobalamin #severemthfr
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HC&U Bite Sized with Kristen Skvorak
May 700:04:21Tap to summarizeHC&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 ACMG. Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HCU Network America on Twitter What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know through the Homocystinurias Data Collection Program powered by Rare-X! Share your NBS story with HCUNA! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u #cobalamin #severemthfr
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Episode 50 With Ruby Jean
Apr 3000:34:28Tap to summarizeIn 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 podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HCU Network America on Twitter Ruby's Story What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know through the Homocystinurias Data Collection Program powered by Rare-X! Share your NBS story with HCUNA! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u #cobalamin #severemthfr
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Episode 49 with Avery Volz
Mar 2600:28:08Tap to summarizeIn 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 medical journey and the impact of being diagnosed with homocystinuria. During Lindsey's Low Pro Bitesss, we go back to basics and discuss a classic veggie sandwich. Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HCU Network America on Twitter What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know through the Homocystinurias Data Collection Program powered by Rare-X! Share your NBS story with HCUNA! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u #cobalamin #severemthfr
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Episode 48 with Amy Flanagan
Feb 2600:39:22Tap to summarizeIn 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 they have faced while navigating the transition of care between two rare diseases. During Lindsey's Low Pro Bitesss, we talk about vegetarian curry. Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HCU Network America on Twitter What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know through the Homocystinurias Data Collection Program powered by Rare-X! Share your NBS story with HCUNA! Carson's Story #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u #cobalamin #severemthfr
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