Ank 3 With Tami from Kansas

Rare Connection

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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

• Wichita’s Littlest Heroes: https://www.wichitaslittlestheroes.com
• Meaningful Life Foundation: https://www.meaningfullifefoundation.com
• Challenge Games: https://www.challengegames.org
• Join the Rare Connection Facebook Group: [Facebook Group Link]
• Support the Show: [Your Buzzsprout “Support the Show” link]
• Send Me a Text: [Your “Send Me a Text” link]

👕 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]

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🧠 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.

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1. Ank 3 With Tami from Kansas (00:00:00)

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3. (Cont.) Ank 3 With Tami from Kansas (00:17:03)