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Rare Connection

Joanna

Rare Connection is a podcast dedicated to rare diseases, undiagnosed conditions, patient advocacy, medical research, and the people working to improve the lives of those living with rare disorders.

Originally launched as Nutrition Equity, the podcast expanded into Rare Connection to reflect its broader mission: sharing the stories, science, and research behind all 10,000+ known rare diseases—not just those related to the Medical Nutrition Equity Act.

Each episode features conversations with patients, caregivers, physicians, researchers, nonprofit leaders, advocates, and biotechnology experts. Together, we explore rare diseases, genetic disorders, newborn screening, clinical trials, emerging treatments, healthcare policy, diagnostic journeys, and the challenges of living with conditions that are often misunderstood.

In medicine, common conditions are often referred to as "horses," while rare diseases are known as "zebras." Although each rare disease affects relatively few people, more than 300 million people worldwide live with a rare disease. Collectively, rare diseases impact more people than many realize, yet they are frequently underdiagnosed, misdiagnosed, or diagnosed only after years of searching for answers.

I host this podcast not only as an advocate, but also as someone living with Homocystinuria (HCU), a rare inherited metabolic disorder. I understand firsthand how isolating a rare diagnosis can be and how important education, research, and community are for patients and families.

Whether you are a patient, caregiver, healthcare professional, researcher, policymaker, student, or simply curious about rare diseases, Rare Connection aims to educate, inspire, and connect people through real conversations and expert insights.

Video episodes are available on YouTube through Rare_Chef, with audio available on all major podcast platforms.

If you have a rare disease, undiagnosed condition, or work in rare disease research, advocacy, or healthcare and would like to be a guest, I'd love to hear from you. Please contact me at joanna.ball41@gmail.com.

 Rare Connection is more than a podcast—it's a growing community. Beyond sharing educational interviews, I help connect patients and families with rare disease organizations, Facebook support groups, advocacy groups, clinical trial information, researchers, and others who may be able to provide support or answer questions. Sometimes the most important step is simply helping someone realize they are not alone. 

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  • 21 episodes
  • Avg 1 hr 5 min
  • English

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Episodes 21

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  • S6 · E5
    March 12 · 33 min

    Schizencephaly with Glen from California

    Send us Fan Mail What is it like to live with multiple rare brain malformations and severe epilepsy? In this episode of Rare Connection, Joanna speaks with Glenn Schallman, who has been diagnosed with three extremely rare neurological conditions: Schizencephaly Polymicrogyria Hypothalamic Hamartoma For more than fifteen years Glenn lived with 10–20 seizures every day, severe head pain, and neurological symptoms that dramatically impacted his life. Schizencephaly is an ultra-rare brain malformation that occurs during fetal development. It creates abnormal clefts in the brain, which can lead to symptoms such as: frequent seizures or epilepsy muscle weakness or paralysis on one side of the body developmental delays speech and communication difficulties coordination and balance problems learning disabilities Because these symptoms can overlap with many neurological disorders, people often spend years searching for answers before receiving a diagnosis. Glenn’s case was especially complex because he also lives with polymicrogyria, a disorder that affects how the brain’s cortex folds, and hypothalamic hamartoma, a rare lesion that can trigger severe epilepsy. For years doctors believed his condition was inoperable. Everything changed in 2017 when neurosurgeon Dr. Michael Nakaji at the Barrow Neurological Institute performed a complex surgery to partially remove and disconnect the hamartoma. The procedure reduced Glenn’s seizures from dozens per day to just a few per week. Another extraordinary part of Glenn’s journey is his seizure-alert cat, Blake. Blake learned to detect Glenn’s seizures and wake him during dangerous episodes, and his lifesaving actions earned him the 2016 Humane Award from the ASPCA. Today Glenn continues to advocate for epilepsy awareness and rare brain disorders, sharing hope with others navigating complex neurological conditions. Topics Discussed • schizencephaly and brain malformations • epilepsy and frequent seizures • polymicrogyria and cortical development disorders • hypothalamic hamartoma • seizure alert animals • rare disease advocacy and resilience Connect with Rare Connection Follow Rare Connection on Facebook, X, and LinkedIn. Video versions of the podcast are available on Joanna’s YouTube channel Rare Chef. Audio listeners can use the Send Me a Text link in the show notes to share feedback or ask questions. Suicide Prevention Resources If you or someone you know is struggling, help is available. United States: Call or text 988 for the Suicide and Crisis Lifeline. Support the show

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