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HCU Awareness Month Bonus Episode

HC&U

Release Date: 10/31/2024

Episode 49 with Avery Volz show art Episode 49 with Avery Volz

HC&U

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 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! ...

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Episode 48 with Amy Flanagan show art Episode 48 with Amy Flanagan

HC&U

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 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! #homocystinuria...

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Episode 47 with Melanie Colter show art Episode 47 with Melanie Colter

HC&U

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 stew.  Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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Episode 46 with Alicia and Miguel Gonzalez show art Episode 46 with Alicia and Miguel Gonzalez

HC&U

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, we talk about kung pao chick peas.  Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu...

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Episode 45 with Tiny and Tomas Devitos show art Episode 45 with Tiny and Tomas Devitos

HC&U

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, we talk about crunchwraps.  Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u...

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Episode 44 with Zara Bono show art Episode 44 with Zara Bono

HC&U

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 pancake tacos. Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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Newborn Screening Bonus Episode 2025 show art Newborn Screening Bonus Episode 2025

HC&U

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 Manager for the Colorado Newborn Screening Program. During Lindsey's Low Pro Snacksss, we talk about maple spice chips. Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! #homocystinuria #hcu #metabolicdisorder #hcu...

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Episode 43 with Liz Gonzalez show art Episode 43 with Liz Gonzalez

HC&U

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 tacos. Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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Adulting 101 Bonus Episode show art Adulting 101 Bonus Episode

HC&U

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 share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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Episode 42 with Brittany Parke show art Episode 42 with Brittany Parke

HC&U

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 sweet potatoes. Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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More Episodes

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 Lesser Evil Paleo Puffs.

Please share the podcast and give us a 5 star rating and review! Email us at podcast@hcunetworkamerica.org!

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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!

Syntis HCU oral enzyme

#homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u