Episodes
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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
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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
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Missing episodes?
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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!
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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!
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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!
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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!
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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!
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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!
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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!
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