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.

Foundation Focus: June 2025 update with CEO Jorey Berry

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



ChronicXTwenties: Demystifying advocacy

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.

Bold Conversations: Misinformation with Dr. Cynthia Baur

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.*

Foundation Focus | July 2025

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.

Undiagnosed: The wounds that won't close

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.

Lunch and Learn: HLH with Dr. Michael Jordan

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.

Foundation Focus | August 2025

**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.


ChronicXTwenties: College and mental health roundtable

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.

Foundation Focus | September 2025

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/

Living well with PI: Caregiving for chronic illness

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.

Lunch and Learn: HLH with Dr. Michael Jordan

Immune Deficiency Foundation

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