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Immune Deficiency Foundation
Immune Deficiency Foundation
99 episodes
3 weeks ago
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.
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Health & Fitness
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All content for Immune Deficiency Foundation is the property of Immune Deficiency Foundation and is served directly from their servers with no modification, redirects, or rehosting. The podcast is not affiliated with or endorsed by Podjoint in any way.
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.
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Health & Fitness
Episodes (20/99)
Immune Deficiency Foundation
Undiagnosed: Reuben & Sherri Johnson on CGD, chronic illness, and the fight for healthcare
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.
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3 weeks ago
30 minutes 38 seconds

Immune Deficiency Foundation
Cancer risk in primary immunodeficiency (PI): Lymphoma, screening, and treatment explained
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.
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1 month ago
1 hour 10 minutes 29 seconds

Immune Deficiency Foundation
Job Hunting With Primary Immunodeficiency: HR Advice on Disclosure, Accommodations & Benefits
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.
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1 month ago
54 minutes 4 seconds

Immune Deficiency Foundation
How FOXP3 changed immunology: Tregs, IPEX, and the Nobel Prize explained
TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Discussing%20Nobel%20Prize.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.
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1 month ago
35 minutes 27 seconds

Immune Deficiency Foundation
Bold Conversations: Food justice with Dr. Jennifer Oilver
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.
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2 months ago
22 minutes 34 seconds

Immune Deficiency Foundation
Living well with PI: Caregiving for chronic illness
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/
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3 months ago
1 hour 24 minutes 56 seconds

Immune Deficiency Foundation
Foundation Focus | September 2025
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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3 months ago
3 minutes 10 seconds

Immune Deficiency Foundation
ChronicXTwenties: College and mental health roundtable
**This conversation includes the topics of suicidal and self-harm ideation. We understand that not everyone is capable of hearing such conversations. Listener discretion is advised.** TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20CX20%20Mental%20health%20and%20college%20roundtable%20.pdf On this throwback episode of ChronicxTwenties, we revisit a roundtable from December 2023. Cassie Mummert, Darcy Gott, Ethan McGrew, Jesse McCall, Lance McCall, and Victoria Medl discuss how they navigate the stress of college, postgraduate studies, and mental wellness with primary immunodeficiency. In memory of Ethan McGrew. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
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3 months ago
47 minutes 57 seconds

Immune Deficiency Foundation
Foundation Focus | August 2025
Transcript: file:///E:/2025/Podcasts/CEO%20Updates/Transcript%20-%20FF%20Aug%202025.pdf CEO Jorey Berry provides an update for the month of August 2025. Topics include Walk for PI, resources for a new school year, and the 2026 National PI Conference.
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4 months ago
2 minutes 31 seconds

Immune Deficiency Foundation
Lunch and Learn: HLH with Dr. Michael Jordan
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20HLH.pdf Dr. Michael Jordan of Cincinnati Children's provides an overview of hemophagocytic lymphohistiocytosis (HLH). View a PDF of this presentation: https://primaryimmune.org/sites/default/files/v2%20FOR%20WEB%20HLH.pdf To learn more, volunteer, or 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.
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4 months ago
56 minutes 36 seconds

Immune Deficiency Foundation
Undiagnosed: The wounds that won't close
Dionne Stalling's 45-year diagnosis journey started with a mosquito bite. Her quest for answers took her through some of the unflinching truths of the healthcare system. This is her story. You can hear more of Dionne's story in the Immune Deficiency Foundation's new documentary, "Compromised: Life without immunity." Visit primaryimmune.org/compromised to register. The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
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4 months ago
11 minutes 15 seconds

Immune Deficiency Foundation
Foundation Focus | July 2025
President and CEO Jorey Berry provides an update for the month of July. Topics include new programming, Walk for PI, new resources, and our organization's statement regarding the passage of H.R.1 (OBBBA). *This message was recorded prior to the incredible show of support by Ironmouse and her community.*
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5 months ago
3 minutes 43 seconds

Immune Deficiency Foundation
Bold Conversations: Misinformation with Dr. Cynthia Baur
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Bold%20Conversations%20-%20Misinformation.pdf Cynthia Baur, PhD, is a health literacy and health communication expert focused on improving health literacy at the individual, family, community and organizational levels. She directs the University of Maryland Horowitz Center for Health Literacy, the nation's first academic health literacy center, and is a professor in the Department of Behavioral and Community Health. She joins Dr. Nicole for a conversation about misinformation, disinformation, what we've learned about combatting them. https://sph.umd.edu/research-impact/research-centers/horowitz-center-health-literacy To donate, volunteer, or learn more about primary immunodeficiency, visit www.primaryimmune.org.
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5 months ago
39 minutes 45 seconds

Immune Deficiency Foundation
ChronicXTwenties: Demystifying advocacy
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Chronic%20Twenties%20Advocacy.pdf Immune Deficiency Foundation staff members Rebecca Russ (grassroots advocacy specialist) and Eric Feigen (regulatory affairs manager) provide insight on what advocacy is, its role in the greater PI community, and the power of young voices. Sign up for IDF action alerts to make your voice heard in just a few clicks! https://primaryimmune.org/get-involved/advocate/action-alerts
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5 months ago
34 minutes 29 seconds

Immune Deficiency Foundation
Foundation Focus: June 2025 update with CEO Jorey Berry
This program is presented with support from CSL Behring, Takeda, and Grifols. Read a transcript of this episode: file:///E:/2025/Podcasts/CEO%20Updates/Transcript%20-%20CEO%20Update%20June%2025.pdf Immune Deficiency Foundation CEO Jorey Berry discusses our new text message program, an upcoming Lunch & Learn, and an exciting new volunteer opportunity.
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6 months ago
2 minutes 55 seconds

Immune Deficiency Foundation
Lunch & Learn: Understanding genetic variants in APDS
Transcript: https://primaryimmune.org/sites/default/files/APDS%20Lunch%20and%20Learn%20transcript.pdf Dr. Jolan Walter (University of South Florida, Johns Hopkins All Children's Hospital) provides an explanation of genetic variants in APDS. View a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20APDS%20IDF%20Lunch%20and%20Learn_jw_toshare.pdf
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7 months ago
45 minutes 16 seconds

Immune Deficiency Foundation
Jorey's monthly wrap-up: May 2025
Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20May%20CEO%20Update.pdf Immune Deficiency Foundation CEO Jorey Berry provides an update for the month of May, 2025.
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7 months ago
3 minutes 29 seconds

Immune Deficiency Foundation
Problems in practice: Insurance with Dr. Marcus Shaker
Transcript: https://primaryimmune.org/sites/default/files/Transcript%20Shaker.pdf Dr. Marcus Shaker is a professor of pediatrics in medicine at Dartmouth's Geisel School of Medicine. On this episode of the Immune Deficiency Foundation podcast, he joined staff members Angie Kotarski, community resource navigator, and Stephanie Steele, director of payor relations and policy to discuss prevalent issues surrounding insurance coverage for primary immunodeficiency patients. To donate, volunteer, or learn more about PI and the Immune Deficiency Foundation visit primaryimmune.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.
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8 months ago
31 minutes 49 seconds

Immune Deficiency Foundation
Jorey's monthly wrap-up: April 2025
Transcript: https://primaryimmune.org/sites/default/files/April%20CEO%20Transcript.pdf Immune Deficiency Foundation president and CEO Jorey Berry provides updates to the PI community.
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8 months ago
4 minutes 6 seconds

Immune Deficiency Foundation
SPECIAL LOOK: Advocacy Day 2025 Training
Transcript: https://primaryimmune.org/sites/default/files/Advocacy%20Day%20Training%20Transcript.pdf This week, 150 advocates will represent the Immune Deficiency Foundation and the greater PI community on Capitol Hill in Washington, D.C. But what does that mean, exactly? Why is it important? And what are these volunteers responsible for? This episode of the Immune Deficiency Foundation podcast will give a special look behind the curtain to those interested in, but intimidated by, advocacy work on behalf of the PI community.
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8 months ago
1 hour 5 minutes 36 seconds

Immune Deficiency Foundation
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.