Immune Deficiency Foundation

Latest Episodes:

Exploring "Compromised: Life Without Immunity" | Behind the documentary Feb 20, 2026

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On February 27, the Immune Deficiency Foundation's first documentary feature ("Compromised: Life Without Immunity") will be available for all to watch on YouTube, free of charge. To celebrate, this podcast episode will feature a panel discussion amongst cast members Kim and Ben Everett, Yvette and Jerry Shorten, Victoria Medl, Shane Brisson, Dionne Stalling, and Ironmouse, who performed the film's theme song. The discussion is led by our foundation's Board Chair, Tracy Shaw. You can watch a video of this panel here: https://youtu.be/qKBjZRSBrl0 The information, terminology, and opinions presented in this forum do not necessarily reflect the views of the Immune Deficiency Foundation, its Board of Trustees, sponsors, or donors. Your support of the Immune Deficiency Foundation makes programming like this possible. Visit www.primaryimmune.org/donate to further our mission.

Why PI affects the skin: Common rashes, infections, and immune dysregulation (dermatology deep dive) Feb 03, 2026

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TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20Dermatological%20issues%20podcast.pdf Dr. Alexandra Freeman and Dr. Heidi H. Kong discuss dermatological manifestations of primary immunodeficiency. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. Your support of the Immune Deficiency Foundation makes programming like this possible. Visit https://primaryimmune.org/donate to further our mission. To view a PDF of this presentation, click here: https://primaryimmune.org/sites/default/files/For%20WEB%20-%20IDF_DermTalkJan13.pdf

Primary immunodeficiency & dental health: Protecting your mouth when your immune system is fragile Jan 13, 2026

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Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20PI%20and%20oral%20health.pdf Click here to view a a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Oral_Health_Arce.pdf Dr. Roger Arce provides a presentation on the links between primary immunodeficiency and oral health. Join us June 25-27 for the 2026 PI Conference in San Antonio, TX! www.primaryimmune.org/conference. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. Your support of the Immune Deficiency Foundation makes programming like this possible. Visit primaryimmune.org/donate to further our mission.

Undiagnosed: Reuben & Sherri Johnson on CGD, chronic illness, and the fight for healthcare Dec 17, 2025

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TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT.Undiagnosed.Reuben.pdf Reuben Johnson was diagnosed with chronic granulomatous disease, or CGD, at the age of ten. So much of his story takes place after his family had found some of the answers that are often elusive for others. Reuben learned early in life that joy is essential and simple. However, he would soon have to confront the cruelty of sickness and the cold realities of a medical system that either didn't understand him or didn't care. These things formed a perfect storm in the center of his life that threatened to wash away the joy that once came so easily to him. Find Reuben and Sherri on LinkedIn: https://www.linkedin.com/in/flyduo/ Your support of the Immune Deficiency Foundation helps ensure that people like Reuben get the education, advocacy, and support they deserve. To learn more about our mission and to donate, visit primaryimmune.org/donate. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.

Cancer risk in primary immunodeficiency (PI): Lymphoma, screening, and treatment explained Dec 02, 2025

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Transcript: https://primaryimmune.org/sites/default/files/Transcription%20-%20PI%20and%20cancer.pdf Dr. Charlotte Cunningham-Rundles provides a presentation on the link between primary immunodeficiency (PI) and cancer. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.

Job Hunting With Primary Immunodeficiency: HR Advice on Disclosure, Accommodations & Benefits Nov 24, 2025

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TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Job%20hunting%20with%20PI.pdf On this episode of ChronicXTwenties, Myles Temple joins Chris Duckett (Director of human resources at the Immune Deficiency Foundation) to discuss the ins and outs of job hunting with primary immunodeficiency. Myles's website: www.mylestemple.com Your support of the Immune Deficiency Foundation helps us spread the word about primary immunodeficiency and those who live with it. To support our work, please donate at primaryimmune.org/donate. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.

How FOXP3 changed immunology: Tregs, IPEX, and the Nobel Prize explained Nov 19, 2025

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TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20How%20FOXP3%20changed%20immunology.pdf Dr. Troy Torgerson (Allen Institute for Immunology, Immune Deficiency Foundation Medical Advisory Committee) and Katherine Lontok (Director of Science and Policy Communications, Immune Deficiency Foundation) discuss the Nobel Prize-winning research of Mary Brunkow, Fred Ramsdell and Shimon Sakaguchi. Find Dr. Torgerson on LinkedIn: https://www.linkedin.com/in/troy-torgerson-44b6207/ Your support of the Immune Deficiency Foundation helps us spread the word about primary immunodeficiency and those who live with it. To support our work, please donate at primaryimmune.org/donate. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.

Bold Conversations: Food justice with Dr. Jennifer Oilver Nov 03, 2025

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TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20FOOD%20JUSTICE.pdf Dr. Jennifer Oliver of Manna Movement Collaborative discusses food justice with Dr. Nicole. Topics include the language we use to discuss food scarcity, SNAP benefits, local food councils, and more. https://www.mannamovement.org/ The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. To support the work of the Immune Deficiency Foundation, visit www.primaryimmune.org/donate.

Living well with PI: Caregiving for chronic illness Oct 06, 2025

Show notes

Jocelyn Cooper (Program manager, Black Women's Health Imperative) and Holly Jones (Executive director, HERstory In Color) give a presentation on caregiving and chronic illness. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. --------------------------------------------------------------------------------------------------- Inequities in the rare disease community: https://21259597.fs1.hubspotuserconte... RDDC Patient & caregiver advisory board interest form: https://docs.google.com/forms/d/e/1FA... HERStory in Color: https://herstoryincolor.org/ IDF Caregiver compassion & connection guide: https://primaryimmune.org/resources/p... RDDC: https://www.rarediseasediversity.org/

Foundation Focus | September 2025 Sep 29, 2025

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TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Foundation%20Focus%20September%202025.pdf Immune Deficiency Foundation CEO Jorey Berry provides updates to the community for the month of September. Topics include Walk for PI, upcoming webinar events, the 2024 annual report, and the film Compromised: Life without immunity.

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