25 集
HC&U Ben and Lindsey Massengale
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- 健康與體能
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 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! -
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, 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 hcupodcast@gmail.com!
HCU Network America on Twitter
Check out HCU Network America! -
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 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 hcupodcast@gmail.com!
HCU Network America on Twitter
Check out HCU Network America! -
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 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 hcupodcast@gmail.com!
HCU Network America on Twitter
Check out HCU Network America!