HC&U
Health, Fitness & Longevity
About
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!
Episodes
- HC&U Bite Sized with Kristen Skvorak
This episode of HC&U Bite Sized features Kristen Skvorak discussing her presentation at ACMG. HC&U is a podcast series about homocystinuria from HCU Network America.
- Episode 50 With Ruby Jean
In episode 50 of HC&U, Ruby Jean, an Australian patient with classical homocystinuria, shares her personal journey and experiences with clinical trials. The episode also includes a brief discussion on low-protein chili cheese tots.
- Episode 49 with Avery Volz
This episode of HC&U features an interview with Avery Volz, a PhD student at Cincinnati Children's Hospital Medical Center and a patient with classical HCU. Volz discusses her personal medical journey and the effects of her diagnosis. The…
- Episode 48 with Amy Flanagan
Amy Flanagan discusses her son Carson's journey with Classical HCU, including the challenges of a misdiagnosis with Marfan syndrome and the transition of care. The episode also touches on vegetarian curry during Lindsey's Low Pro Bitesss.
- Episode 47 with Melanie Colter
Melanie Colter shares her family's experience with a late diagnosis of Homocystinuria (HCU) for her son, Masen. The episode also features a discussion on vegetarian Irish stew.
- 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 l…
- 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 liv…
- 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 M…
- 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 Cl…
- 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. Du…
- 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 Lindse…
- 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. Dur…
- 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…
- 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. Du…
- 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 strip…
- 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 unders…
- 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 podca…
- 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 o…
- 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…
- 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 metaboli…
- 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 Trade…
- 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…
- 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 thro…
- 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…
- 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…
- 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…
- 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 Snack…
- 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 Newbor…
- 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 scho…
- 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 schoo…
- 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 Lin…
- 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 co…
- 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…
- Episode 26 with Sam Stallings
In the twenty sixth episode of HC&U, we interview Sam Stallings, HCU patient and advocate. We discuss Sam's experience living with multiple rare diseases and her advocacy for the HCU community. We wrap up with Lindsey's Low-Pro Bitessss. W…
- Episode 25 with Jamela Gutierrez
In the twenty fifth episode of HC&U, we interview Jamela Gutierrez, HCU patient and advocate. We discuss Jamela's journey with HCU and patient advocacy. We wrap up with Lindsey's Low-Pro Bites. We discuss veggie pot pie and rate it on our…
- Episode 24 with Liz Carter
In the twenty fourth episode of HC&U, we interview Liz Carter, communications manager of HCU Network America, caregiver advocate, and mother to Elliot who has classical homocystinuria. We discuss metabolic newborn screening, patient advoca…
- Episode 23 with Brittany Parke
In this episode, we speak with Brittany Parke, mom of Grayson, who lives with Homocystinuria, Cobalamin G. We discuss why advocacy and research for Hydroxocobalamin is so important for the cobalamin community. We also share our low protein…
- Episode 22 with Danae Bartke
In the twenty second episode of HC&U, we continue our interview with Danae! In this episode, we interview (again) Danae Bartke , an HCU patient and the executive director of HCU Network America. In the second part of our 2 part interview,…
- Episode 21 HC&U Returns
In the twenty first episode of HC&U, we focus on getting our feet back under us as we return from a long hiatus! In this episode, we interview (again) Danae Bartke , an HCU patient and the executive director of HCU Network America. In the…
- Episode 20 with Ashley Longthorn
In the twentieth episode of HC&U, we have our regular "Tell Me Something Good" segment where we share several bits of good news regarding the podcast! In this episode, we interview Ashley Longthorn, an HCU patient in the UK. We discuss dea…
- Episode 19 with Danae Bartke's Return
In this episode, we interview Danae Bartke, the executive director of HCU Network America. We discuss dealing with HCU and school and navigating the Covid-19 pandemic with HCU. We wrap up with Lindsey's Low-Pro Bites. We discuss a fantasti…
- Episode 18 with Dr. Anthony Quinn
In the eighteenth episode of HC&U, we have our regular "Tell Me Something Good" segment where we share several bits of good news regarding the podcast! In this episode, we interview Dr. Anthony Quinn, the CEO of Aeglea Biotherapeutics. We…
- Episode 17 with Raenette Franco
In the seventeenth episode of HC&U, we have our regular "Tell Me Something Good" segment where we share several bits of good news regarding the podcast! In this episode, we interview Raenette Franco. We discuss the ins and outs of insuranc…
- Episode 16 with Pam Penrose
In the sixteenth episode of HC&U, we have our regular "Tell Me Something Good" segment where we share several bits of good news regarding the podcast! In this episode, we interview Pam Penrose. We discuss her journey in being diagnosed and…
- HC&U Episode 15
In the fifteenth episode of HC&U, we have our regular "Tell Me Something Good" segment where we share several bits of good news regarding the podcast! In this episode, we interview Breun and Jeremy Smeltser. We discuss their journey in rai…
- HC&U Episode 14
In the fourteenth episode of HC&U, we have our regular "Tell Me Something Good" segment where we share several bits of good news regarding the podcast! In this episode, we interview Amber Gibson, recipe coordinator for HCU Network America.…
- HC&U Episode 13
In the thirteenth episode of HC&U, we have our regular "Tell Me Something Good" segment where we share several bits of good news regarding the podcast! In this episode, we interview Frank Glavin (CEO) and Jeanie Price (Executive Director o…
- HC&U Episode 12
In the twelfth episode of HC&U, we have our regular "Tell Me Something Good" segment where we share several bits of good news regarding the podcast! In this episode, we interview Amanda Nethery, an HCU patient, and she shares her journey w…
- HC&U Episode 11
In the eleventh episode of HC&U, we have our regular "Tell Me Something Good" segment where we share several bits of good news regarding the podcast! In this episode, we talk about New Year's resolutions concerning HCU. We also talk about…
- HC&U Episode 10
In the tenth episode of HC&U, we have our regular "Tell Me Something Good" segment where we share several bits of good news regarding the podcast! In this episode, we interview Ben's sister, Breanna (Phil)! She talks about following a low…