HC&U

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!

  1. 30 Sept

    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 geneticist in the Division of Medical Genetics at Emory University, about her article concerning pancreatitis and homocystinuria.  Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! Pancreatitis Article 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

  2. 29 Sept

    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 experience (episode 2), and specifics on Travere's Harmony and Compose studies (episode 3).  We are grateful to have been given the opportunity to work with Science 37 and Travere Therapeutics on getting this information out to the homocystinuria community. In the final episode of this special series, we hear from Dr. David Kudrow, Principal Investigator for the Travere HARMONY and COMPOSE studies being conducted through Science 37. Dr. Kudrow gets into specifics of HARMONY and COMPOSE, how they relate to each other, what participation for patients and caregivers might look like, and gives the homocystinuria community a clearer understanding of the research and the opportunity to ask questions.  During Lindsey's Pro Snacksss, we talk about BEN'S homemade salsa. HARMONY/COMPOSE Study Sign-Up Check Out Science 37! Check Out Travere Therapeutics 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 #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u #cobalamin #severemthfr

    Decentralized Clinical Trials: Travere's HARMONY and COMPOSE Studies (3/3)

  3. 25 Sept

    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 experience (episode 2), and specifics on Travere's Harmony and Compose studies (episode 3).  We are grateful to have been givien the opportunity to work with Science 37 and Travere Therapeutics on getting this information out to the homocystinuria community. In episode 2, we hear from Senior Field Nursing Operations Manager, Heather Molatch. She sheds some light on what a decentralized clinical trial home visit might look like for both nurses and patients.  During Lindsey's Pro Snackssss, we talk about Snacklins. HARMONY/COMPOSE Study Sign-Up Check Out Science 37! Check Out Travere Therapeutics 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 #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u #cobalamin #severemthfr

    Decentralized Clinical Trials: The Nurse/Patient Experience (2/3)

  4. 24 Sept

    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 also search specialneedsparentsuk on Instagram and Metabolic Support UK on all platforms! During Lindsey's Low Pro Bitesss, we discuss .  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 Matthew's Story Joseph's YouTube Joseph's TikTok 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

  5. 22 Sept

    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 experience (episode 2), and specifics on Travere's Harmony and Compose studies (episode 3).  We are grateful to have been given the opportunity to work with Science 37 and Travere Therapeutics on getting this information out to the homocystinuria community. In episode 1, we hear from Dr. Debra Weinstein, Science 37's CMO and Jeff Richardson, Science 37's VP of Recruiting and Operations. They give an overview of decentralized clinical trials and discuss why this approach to clinical research may be especially relevant to the homocystinuria community. During Lindsey's Pro Snacksss, we talk about Lindsey's homemade applesauce. HARMONY/COMPOSE Study Sign-Up Check Out Science 37! Check Out Travere Therapeutics 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 #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u #cobalamin #severemthfr

    Decentralized Clinical Trials (1/3)

  6. 27 Aug

    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 of their routine. During Lindsey's Low Pro Bitesss, we discuss low protein pasta salad.  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 Anniston'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

    Episode 54 with Brittany Hunter

  7. 21 Aug

    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 Program with Global Genes, Dr. Zohreh Talebizadeh about data sharing through RareX.  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

  8. 30 Jul

    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 manages his treatment of homocystinuria and being physically active.  During Lindsey's Low Pro Bitesss, we discuss fried cabbage.  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 Patrick'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

    Episode 53 with Patrick Lynch
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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 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!

Information

  • Creator
    Ben and Lindsey Massengale
  • Years Active
    2018 - 2026
  • Episodes
    75
  • Rating
    Clean
  • Show Website
    HC&U