Search a title or topic

Over 20 million podcasts, powered by 

Player FM logo
Artwork

Content provided by Joanna. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Joanna or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://staging.podcastplayer.com/legal.
Player FM - Podcast App
Go offline with the Player FM app!

Ank 3 With Tami from Kansas

32:00
 
Share
 

Manage episode 487304221 series 3485028
Content provided by Joanna. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Joanna or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://staging.podcastplayer.com/legal.

Send us a text

In this episode of Rare Connection, host Joanna sits down with Tami — a teacher, advocate, and mother of 7-year-old Jonathan, who lives with a rare ANK3-related disorder. Tami shares her family's diagnostic journey, how Jonathan's multiple conditions impact their daily life, and how she balances caregiving with her work in early childhood education.

We discuss:

  • Jonathan’s rare disease diagnosis and overlapping conditions (including hypotonia, autism, ADHD, and more)
  • The emotional and logistical challenges of raising a child with multiple complex needs
  • Tami’s insights as a teacher working with children ages 6 weeks to 5 years old
  • Feeding and nutrition struggles, sensory issues, and strategies that help
  • The power of advocacy and community support
  • Tami’s involvement with Wichita’s Littlest Heroes, Meaningful Life Foundation, and Challenge Games

Whether you're a parent, caregiver, educator, or rare disease advocate, this episode offers insight, encouragement, and practical wisdom.

🔗 Links & Resources

👕 Shop Awareness Merch

Check out the t-shirt I designed to raise awareness for invisible disabilities and rare diseases — available for worldwide shipping: [Bonfire merch link]

📱 Follow & Subscribe

  • YouTube: Rare Chef
  • Podcast: [Rare Connection]
  • Facebook, X, LinkedIn: @RareConnection

🧠 Mental Health Support

If you or someone you know is struggling, call or text 988 for the Suicide & Crisis Lifeline — available 24/7 in the U.S.

Support the show

  continue reading

57 episodes

Artwork
iconShare
 
Manage episode 487304221 series 3485028
Content provided by Joanna. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Joanna or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://staging.podcastplayer.com/legal.

Send us a text

In this episode of Rare Connection, host Joanna sits down with Tami — a teacher, advocate, and mother of 7-year-old Jonathan, who lives with a rare ANK3-related disorder. Tami shares her family's diagnostic journey, how Jonathan's multiple conditions impact their daily life, and how she balances caregiving with her work in early childhood education.

We discuss:

  • Jonathan’s rare disease diagnosis and overlapping conditions (including hypotonia, autism, ADHD, and more)
  • The emotional and logistical challenges of raising a child with multiple complex needs
  • Tami’s insights as a teacher working with children ages 6 weeks to 5 years old
  • Feeding and nutrition struggles, sensory issues, and strategies that help
  • The power of advocacy and community support
  • Tami’s involvement with Wichita’s Littlest Heroes, Meaningful Life Foundation, and Challenge Games

Whether you're a parent, caregiver, educator, or rare disease advocate, this episode offers insight, encouragement, and practical wisdom.

🔗 Links & Resources

👕 Shop Awareness Merch

Check out the t-shirt I designed to raise awareness for invisible disabilities and rare diseases — available for worldwide shipping: [Bonfire merch link]

📱 Follow & Subscribe

  • YouTube: Rare Chef
  • Podcast: [Rare Connection]
  • Facebook, X, LinkedIn: @RareConnection

🧠 Mental Health Support

If you or someone you know is struggling, call or text 988 for the Suicide & Crisis Lifeline — available 24/7 in the U.S.

Support the show

  continue reading

57 episodes

All episodes

×
 
Loading …

Welcome to Player FM!

Player FM is scanning the web for high-quality podcasts for you to enjoy right now. It's the best podcast app and works on Android, iPhone, and the web. Signup to sync subscriptions across devices.

 

Copyright 2025 | Privacy Policy | Terms of Service | | Copyright
Listen to this show while you explore
Play