HC&U

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 ACMG.  Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! 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

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 podcast and give us a 5 star rating and review! Email us at [email protected]! 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

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 [email protected]! 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

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 [email protected]! 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

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 [email protected]! 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! Masen's Story Vegetarian Irish Stew #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #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 [email protected]! 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! Andrea's Story Kung Pao Chick Peas #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #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 [email protected]! 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! Alexander's Story #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #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 [email protected]! 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! Zoraiz's and Areeba's Story #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #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 [email protected]! 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

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 [email protected]! 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! Everett's and Clementine's Story #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #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 [email protected]! 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

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 [email protected]! 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! Grayson's Story #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 vegetarian hamburger helper. Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! 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! Olive's Story #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 sloppy Joe sandwiches. Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! 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! Nico's Story #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 HC&U's new podcast art! Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! 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! NORD's Paper #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 about jackfruit salad sandwiches. Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! 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! Michael's Story #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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! 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

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 talk about cabbage steaks. Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! 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

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. Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! 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! Vegan Shepherd's Pie #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 about Lindsey's cream cheese and tomato pasta. Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! 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! Vegan Shepherd's Pie #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 and give us a 5 star rating and review! Email us at [email protected]! 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! Ari's Story #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 Low Pro Bitesss, we talk about vegan shepherd's pie. Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! 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! Vegan Shepherd's Pie #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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, we talk about one of Ben's favorite dishes, veggie pizza. Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! 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

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, veggie casserole. Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! 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

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 [email protected]! 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! Syntis HCU oral enzyme #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 Bitesss, we talk about crockpot vegetarian chili. Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! 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! Crockpot Vegetarian Chili #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 the podcast and give us a 5 star rating and review! Email us at [email protected]! 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! EveryLife Foundation's Newborn Screening Action Center CDC Newborn Screening Page Baby's First Test HCU Network America's Newborn Screening Page Sign HCU Network America's Petition on Change.org Share your NBS story with HCUNA! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 NBS policy and practice. During Lindsey's Low Pro Bitesss, we talk about garlic and herb steakhouse mushrooms. Please share the podcast and give us a 5 star rating and review! Email us at [email protected]! 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! EveryLife Foundation's Newborn Screening Action Center CDC Newborn Screening Page Baby's First Test HCU Network America's Newborn Screening Page Sign HCU Network America's Petition on Change.org Share your NBS story with HCUNA! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 about crockpot cauliflower rice stir fry. Please share the podcast and give us a 5 star rating and review! Help HCU Network America raise money for research by registering for the Race for Reseach here! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter Email the podcast! 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! Cambrooke School Lunch Program Sample Letters:Requesting and Initial Evaluation for Special Education Services Email Dr. Hitti! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 Low Pro Bitesss, we have a special guest and enjoy some southern gravy. Please share the podcast and give us a 5 star rating and review! Help HCU Network America raise money for research by registering for the Race for Reseach here! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter Email the podcast! 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! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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. Please share the podcast and give us a 5 star rating and review! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter Email the podcast! 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! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 episode, but be sure to check our @lowprobites on Instagram to see a new recipe! Please share the podcast and give us a 5 star rating and review! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter Email the podcast! 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! Check out Alex's music here! Alex on Instagram #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 sound a call to arms for our community! We hope you enjoy! Please share the podcast and give us a 5 star rating and review! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter Email the podcast! HCU Network America on Twitter Everylife Foundation for Rare Diseases Rare Disease Legislative Advocates (RDLA) What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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. We discuss homemade pop tarts and rate it on our random fruit or veggie scale! We hope you enjoy! Please share the podcast and give us a 5 star rating and review! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter Email the podcast! HCU Network America on Twitter Everylife Foundation for Rare Diseases Rare Disease Legislative Advocates (RDLA) What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 random fruit or veggie scale! We hope you enjoy! Please share the podcast and give us a 5 star rating and review! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter Email the podcast! HCU Network America on Twitter Patients and Providers for MNEA https://flok.org Register for "Ask me anything with Flok" on Monday, 4/22 @ 7 PM ET here! Newborn Screening Petition Everylife Foundation for Rare Diseases What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 advocacy, and Rare Disease Week. We wrap up with Lindsey's Low-Pro Bites. We discuss "healthy tomato basil soup" and rate it on our random fruit or veggie scale! We hope you enjoy! Please share the podcast and give us a 5 star rating and review! Check out HCU Network America! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter Email the podcast! HCU Network America on Twitter Elliot's Story Newborn Screening Petition Everylife Foundation for Rare Diseases Rare Disease Legislative Advocates (RDLA) Expecting Health VMP Genetics- Sign up to become a patient/teacher What's your newborn screening story? Diagnosed at birth? Not screened? Missed? Let us know! #homocystinuria #hcu #metabolicdisorder #hcu #classicalhomocystinuria #hcunetworkamerica #hcunetworkaustralia #patientadvocacy #hcandu #hc&u

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 recipe of the month in Lindsey's Low Pro Bitessss. It is a veggie stew that is great for the winter months (or anytime really)! Please share the podcast and give us a 5 star rating and review! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter Email us here! HCU Network America on Twitter Check out HCU Network America!

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, we discuss the Rare-X data sharing platform. We also announce a new podcast series in collaboration with HCU Network America that debuts in 2024! We miss Lindsey's Low-Pro Bites this episode, but it will be back! We hope you enjoy! **FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!   Please share the podcast and give us a 5 star rating and review! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HC&U Blog Email us at [email protected]! HCU Network America on Twitter Check out HCU Network America!

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 first part of our 2 part interview, we discuss the upcoming ELPF-DD meeting concerning the HCU community. We miss Lindsey's Low-Pro Bites this episode, but it will be back! We hope you enjoy! **FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!   Please share the podcast and give us a 5 star rating and review! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HC&U Blog Email us at [email protected]! HCU Network America on Twitter Check out HCU Network America!

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 dealing with HCU and the importance of staying on diet. We wrap up with Lindsey's Low-Pro Bites. We discuss million dollar spaghetti and rate it on our random fruit or veggie scale! We hope you enjoy! **FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!   Please share the podcast and give us a 5 star rating and review! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HC&U Blog Email us at [email protected]! HCU Network America on Twitter Check out HCU Network America!

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 fantastic enchilada bake and rate it on our random fruit or veggie scale! We hope you enjoy! **FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!   Please share the podcast and give us a 5 star rating and review! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HC&U Blog Email us at [email protected]! HCU Network America on Twitter Check out HCU Network America!

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 discuss research and treatments concerning HCU. We wrap up with Lindsey's Low-Pro Bites. We discuss loaded cauliflower rice and rate it on our random veggie scale! We hope you enjoy! **FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!   Please share the podcast and give us a 5 star rating and review! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HC&U Blog Aeglea on Twitter Aeglea's Website Email us at [email protected]! Check out HCU Network America!

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 insurance coverage and HCU. We wrap up with Lindsey's Low-Pro Bites. We discuss crispy potato tacos and rate it on our random veggie scale! We hope you enjoy! **FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!   Please share the podcast and give us a 5 star rating and review! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HC&U Blog Email us at [email protected]! Check out HCU Network America! Baja Sauce Copycat Recipe!

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 dealing with HCU. We wrap up with Lindsey's Low-Pro Bites. We discuss vegetarian Zuppe Toscana and rate it on our random veggie scale! We hope you enjoy! **FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!   Please share the podcast and give us a 5 star rating and review! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HC&U Blog Email us at [email protected]! Check out HCU Network America!

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 raising kids who have been diagnosed with HCU. We wrap up with Lindsey's Low-Pro Bites. We discuss shredded carrot BBQ and rate it on our random veggie scale! We hope you enjoy! **FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE!   Please share the podcast and give us a 5 star rating and review! Pulled BBQ Carrots HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HC&U Blog Email us at [email protected]! Check out HCU Network America!

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. We discuss low protein recipes and managing a low protein diet for adults and kids. We wrap up with Lindsey's Low-Pro Bites. We discuss eggplant vegetale (insert Ben's bad Italian accent here)and rate it on our random veggie scale! We hope you enjoy! **FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE! Please share the podcast and give us a 5 star rating and review! Cauliflower Curry HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HC&U Blog Email us at [email protected]! Check out HCU Network America!

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 of Clinical Operations) of Orphan Technologies. We discuss OT-58 and the natural history study. We wrap up with Lindsey's Low-Pro Bites. We discuss cauliflower curry and rate it on our random veggie scale! We hope you enjoy! **FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE! Please share the podcast and give us a 5 star rating and review! Cauliflower Curry HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HC&U Blog Email us at [email protected]! Check out HCU Network America!

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 with HCU. We wrap up with Lindsey's Low-Pro Bites. We discuss cauliflower gnocchi and rate it on our random veggie scale! We hope you enjoy! **FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE! Please share the podcast and give us a 5 star rating and review! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HC&U Blog Email us at [email protected]! Check out HCU Network America!

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 surgery prep with HCU, and eating at restaurants on a protein budget. Yes, a protein budget. Ben coined that phrase. We wrap up with Lindsey's Low-Pro Bites. We discuss cauliflower crust pizza and rate it on our random veggie scale! We hope you enjoy! **FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE! Please share the podcast and give us a 5 star rating and review!   HC&U on Facebook   Find Our Low Protein Ideas on Instagram!   HC&U on Twitter   HC&U Blog   Email us at [email protected]!   Check out HCU Network America!

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 protein diet for a week. We wrap up with Lindsey's Low-Pro Bites. We discuss Lindsey's veggie casserole and rate it on our random veggie scale! We hope you enjoy! **FREE SWAG ALERT** Want a FREE T-shirt? We are asking listeners to tell us something good regarding your experience with HCU! This could be anything from getting your levels down, finding a new recipe, or finding a better metabolic formula! Reach out to us using one of the methods listed below! We would love to hear from you! Plus, these shirts are pretty sweet. Oh, and did we mention? They are FREE! Please share the podcast and give us a 5 star rating and review! HC&U on Facebook Find Our Low Protein Ideas on Instagram! HC&U on Twitter HC&U Blog Email us at [email protected]! Check out HCU Network America!