28 episodes
HC&U Ben and Lindsey Massengale
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- Health & Fitness
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!
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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 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 -
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 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 -
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. 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 -
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 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 -
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 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 -
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 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!