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This podcast is a service of the Immune Deficiency Foundation — a nonprofit organization dedicated to improving the diagnosis, treatment, and quality of life of people diagnosed with primary immunodeficiency, or PI.
"Bold Conversations" is a program that explores the harsh realities of health access in the United States. Hosted by Dr. Nicole Rochester.
"Undiagnosed" is a narrative docuseries on that tells the true stories of PI patients and their long journeys to proper diagnosis and treatment.
To learn more about primary immunodeficiency, the PI community, or to support the foundation as a donor or volunteer, please visit our website at www.primaryimmune.org. If you have any questions you would like to be answered, email us at idf@primaryimmune.org.
"Bold Conversations" is a program that explores the harsh realities of health access in the United States. Hosted by Dr. Nicole Rochester.
"Undiagnosed" is a narrative docuseries on that tells the true stories of PI patients and their long journeys to proper diagnosis and treatment.
To learn more about primary immunodeficiency, the PI community, or to support the foundation as a donor or volunteer, please visit our website at www.primaryimmune.org. If you have any questions you would like to be answered, email us at idf@primaryimmune.org.
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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
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.
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.
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.
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.
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.
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.
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.
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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/
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.
**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.
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.
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.
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.
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.*
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.
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
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.
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
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
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.
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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