Ben and Lindsey

Podcast for people affected by HCU! Want to share your journey? If so, please reach out! See Ben's patient story at

[HCU Network America @HCUAmerica]

🎙️ HC&U: A Homocystinuria Podcast episode OUT NOW!

💙 Ben welcomes Rene to the table! 💙

Rene is the father of Nico, who was diagnosed through the Scotland newborn screening program with Classical HCU.

➡️ Catch the HC&U Podcast at https://t.co/MIHif0qN63
@RARE_X_

[Ben and Lindsey @HCUPodcast]

.@HCUAmerica @HcuNetworkAust

[Ben and Lindsey @HCUPodcast]

🎙️ BONUS EP! How do we strengthen trust in newborn screening? 🍼✨
@RareDiseases Sr. Policy Analyst Allison Herrity talks building trust & how the ACHDNC pause affects #homocystinuria families.
🎧 Spotify: https://t.co/RjtgMcvSqk
Apple: https://t.co/XJSMfi1zy6
#NewbornScreening

[Ben and Lindsey @HCUPodcast]

🏀🏀Calling all armchair bracketologists!🏀🏀

🗣️🗣️Join the HC&U bracket challenge through ESPN! No entry fee! Link Below! ⬇️⬇️

https://t.co/BYC6kkeFhR

[HCU Network America @HCUAmerica]

🎙️ New Podcast episode drops 3/28!

Ben welcomes Jamela Gutierrez, adult patient w/HCU & a medical professional. She'll share her insights & experiences with the low protein diet, medical formula, and much more!
➡️ Catch it on Spotify, Apple Podcasts, iHeart, or Amazon Music!

[HCU Network America @HCUAmerica]

The more we know about our patient/caregiver experience with the current treatment, the better informed & empowered we are as we push for better #treatments & #therapies!

Fill out the Interventional or Medical Diets Survey at
➡️ https://t.co/0mljTyJ7T5

@RARE_X_

[HCU Network America @HCUAmerica]

Our #HCUHero this month is dancing queen 👑 and "Cannon Arm", Ellie! 🥎

We first met Ellie back in 2018 when she was just 6 months old! Today, she's in kindergarten, and we're bringing you her 5-year-update story!

You can read her full story here:
➡️ https://t.co/j3r3LPlh8E

[HCU Network America @HCUAmerica]

🦓 It's is RARE DISEASE DAY 2024! 🦓 What better way to observe the day than with a new HC&U podcast episode!

In this episode, Ben welcomes Liz, mom of 7-year-old Elliott, who lives w/Classical HCU.

➡️ Listen on Spotify or Apple Podcasts, or head to https://t.co/MIHif0qN63

[HCU Network America @HCUAmerica]

📣 Live at 10 am ET!!
➡️ Head to https://t.co/vOLjaxSVxw & fill out the box "Access the Live Stream".

YOU can participate by responding to interactive poll questions💻, calling in live☎️, and by submitting written comments ✍️
Submit comments here➡️ https://t.co/WPqSILz5gg

[HCU Network America @HCUAmerica]

Ever felt like no one hears or understands your experiences as a person living with Classical HCU, or a Parent/Caregiver/Family member?
Well, that's about to change! 🙌

➡ Submit your experiences here! https://t.co/aG68smMB29

[Ben and Lindsey @HCUPodcast]

Ben is honored to share insights and contribute to transforming the lives of #Homocystinuria patients globally. Be part of the transformation, join @HCUAmerica Classical HCU El-PFDD virtually on 10/27! Register and participate at https://t.co/Tvt6ghkuUS 

#ClassicalHCUELPFDD

[HCU Network America @HCUAmerica]

Our Community Prep meeting for our EL-PFDD is happening THIS WEEK and we need every 👏single 👏member 👏of our community present!!

Register NOW!
➡️ https://t.co/2a9xUpKgXv

#ELPFDD #FDA #patientexperience #treatment #community #virtualMeeting #homocystinuria #HCU #HopeConnectsUs

[Ben and Lindsey @HCUPodcast]

HC&U is excited to join @HCUAmerica and share Ben’s #patientstory along with 4 others as part of the Classical #Homocystinuria EL-PFDD on October 27th at 10:45 am ET. He will be sharing the symptoms and impact HCU has had on him!

Listen live, register - https://t.co/Tvt6ghkuUS

[Ben and Lindsey @HCUPodcast]

Let us know how you like the episode!

*It may take some podcast feeds longer than others to update, so keep checking back!*
https://t.co/ROFflVfyZl
https://t.co/64piTtW4Re
https://t.co/J5AD3kXrwU

[Ben and Lindsey @HCUPodcast]

Episode 21 is now available on Apple Podcasts/iTunes, our Libsyn direct link, and other podcast platforms! We interview Danae Bartke, an HCU patient and the executive director of Homocystinuria - HCU Network America about the upcoming ELPF-DD meeting concerning the HCU community.

[The Journal of Inherited Metabolic Disease @JIMD_Editors]

Latest #podcast available now!
Professor Kruger of the @FoxChaseCancer discusses his work to find a robust gene therapy in CBS deficiency (#homocystinuria)

Apple: https://t.co/7aNxzaAjzd

Spotify: https://t.co/R4v9Id6d4O

Audible: https://t.co/4E3e5xTfe6

[Ben and Lindsey @HCUPodcast]

Our blog post about the episode will be up soon!
https://t.co/EOK9BlvwFV
*It may take some podcast feeds longer than others to update, so keep checking back!*
https://t.co/ROFflVfyZl
https://t.co/64piTtW4Re
https://t.co/CfsgbKtzS9

[Ben and Lindsey @HCUPodcast]

Episode 20 is now available on Apple Podcasts/iTunes, Stitcher, and our Libsyn direct link! We interview Ashley Longthorn, an HCU patient in the UK, about the difficulties of following a low protein diet. We also share a low protein recipe in Lindsey's Low Pro Bites!

[Aeglea BioTherapeutics @aegleabio]

Did you know that many people with #Homocystinuria experience declining vision? Early diagnosis is important in getting a head start to managing its effects. Learn more about living with #HCU from @HCUAmerica's resources: https://t.co/fujZbF2j0S #HCUAwareness #NewbornScreening

[HCU Network America @HCUAmerica]

#HCUAwareness2021 #HCUFact 10c.
Cobalamin (cbl) disorders can be confusing since we call them by letters of the alphabet in the order they were discovered, CblC deficiency, CblD deficiency, CblE deficiency, CblF deficiency, CblG deficiency, CblX deficiency, etc.