Rare Connection

Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture. Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime. As someone with a rare condition myself (Homocystinuria or HCU), know that having a rare condition can be very lonely. Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death. If you are interested in talking and feel comfortable on camera please contact me at joanna.ball41@gmail.com. I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.

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Rare Connection

Ank 3 With Tami from Kansas

June 06, 2025 • Joanna • Season 5 • Episode 2

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

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]

📱 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.

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

Support the show