Immune Deficiency Foundation
This podcast is produced by the Immune Deficiency Foundation, a nonprofit focused on improving diagnosis, treatment, and quality of life for people with primary immunodeficiency, or PI. It features programs such as "Bold Conversations," hosted by Dr. Nicole Rochester, which examines health access challenges in the United States. Another featured series, "Undiagnosed," tells true stories of PI patients and their journeys toward proper diagnosis and care. The podcast also shares ways to learn more, support the foundation, or get involved.
Episodes
Why some people with genetic variants never get sick: A conversation with Dr. Dusan Bogunovic
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20Will%20my%20genetic%20variant%20make%20me%20sick.pdf
View a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Will%20my%20genetic%20variant%20make%20me%20sick.pdf
Dr. Dusan Bogunovic of Columbia University discusses genetic variants.
To volunteer, donate, or learn more about the Immu
Finding joy in advocacy with Rafhaela Vedia
TRANSCRIPT: https://primaryimmune.org/sites/default/files/Transcript%20-%20Vedia.pdf
Longtime Immune Deficiency Foundation advocate Rafhaela Vedia sits down with Rebecca Russ, the foundation's grassroots advocacy specialist, to discuss her journey with severe combined immune deficiency (SCID) and the fulfilment she gets from legislative advocacy.
Your support helps make programming like this pos
Bold conversations: Disparaging language in patient records with Ilana Jacqueline
Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20Disparaging%20language.pdf
Author and creator Ilana Jacqueline joins Dr. Nicole to discuss the lasting impact of disparaging language sometimes used in patient records.
https://ilanajacqueline.com/
https://yourgpsdoc.com/
Your support makes programming like this possible. Donate today to further our mission. www.primary
Plasma donation myths with Professor Peter Jaworski
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20Jaworski%20interview.pdf
Peter Jaworski is a professor of ethics at Georgetown University who shares a highly specific field of interest with the primary immunodeficiency community: Plasma donation. He devotes an enormous amount of his time to spreading awareness about global plasma supply, as well as to correcting the com
Voices of PI: Young adults at the 2026 National Conference
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPTION%20YA%20voices%20conference.pdf
In June 2026, we interviewed young adults who attended the Immune Deficiency Foundation National Conference in San Antonio. Questions ranged in scope from joys and laughter to fears and worries.
Your support of the Immune Deficiency Foundation makes content like this possible. To donate or volu
Long COVID & primary immunodeficiency with Dr. Manish Butte
Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20Long%20covid%20and%20PI.pdf
Dr. Manish Butte (E. Richard Stiehm Endowed Chair, Professor, and Division Chief of Pediatric immunology at UCLA) provides an update on what's known (and unknown) about long COVID and primary immunodeficiency.
View this webinar on YouTube: https://youtu.be/5xWTdxCudvA
The information, termi
Primary immunodeficiency in 2026: New practice parameters, genetic testing, and what's changed for patients
TRANSCRIPT: https://primaryimmune.org/sites/default/files/Transcript%20-%20Practice%20parameters.pdf
On this episode of the Immune Deficiency Foundation podcast, Dr. Paula Henao and Katherine Lontok, Ph.D. (the Foundation's medical director and director of science and policy communications, respectively) discuss the highly anticipated practice parameters for primary immunodeficiency, or inborn er
Every piece adds strength: Interactive art at the 2026 National Conference
Transcript: https://primaryimmune.org/sites/default/files/Transcription%20-%20Art%20installations.pdf
On this episode of the Immune Deficiency Foundation Podcast, Tammy Black and Elizabeth Ferguson (the organization's chief communications officer and director of events, respectively) discuss the interactive art installations that will be featured at this year's National Conference. To see and hel
2026 National Conference: What to Expect in San Antonio
Emma Mertens and Megan Messick discuss the Immune Deficiency Foundation's upcoming 2026 National Conference.
Click here to register: https://web.cvent.com/event/098b166d-370c-4dda-b02e-f7d80d76a5c5/websitePage:190e3719-e947-4da1-8dc7-e18fd2abd955?environment=P2
Your support of the Immune Deficiency Foundation makes our content and events possible. Click here to donate: https://primaryimmune.org/
"Make your own path as you walk." | CEO Jorey Berry introduces medical director Dr. Paula Henao
TRANSCRIPT: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Jorey%20and%20Paula.pdf
On this episode, CEO Jorey Berry sits down with the foundation's new medical director, Dr. Paula Henao to discuss her career, her new role, and the state of immunology.
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of the Immune Deficiency Foun
Exploring "Compromised: Life Without Immunity" | Behind the documentary
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
Why PI affects the skin: Common rashes, infections, and immune dysregulation (dermatology deep dive)
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
Primary immunodeficiency & dental health: Protecting your mouth when your immune system is fragile
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, T
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 confro
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.
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 Foundatio
How FOXP3 changed immunology: Tregs, IPEX, and the Nobel Prize explained
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 Shimo
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 no
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.
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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.
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 Dece
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.
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,
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, a
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.*
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 heal
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 hear
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.
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
The information,
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.
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 iss
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.
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 w
Living well with PI: Impact of federal policy changes on the PI community
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Legislative%20webinar.pdf
This panel discussion features Immune Deficiency Foundation CEO Jorey Berry, as well as Chief Public Policy Officer Lynn Albizo, Community Resource Navigator Angie Kotarski, and Jodi Taub, owner of Jodi Taub Therapy, discuss the impact of recent federal policy changes on the PI community.
The inform
Bold Conversations: The elephant in the exam room
https://primaryimmune.org/sites/default/files/Bold%20Conversations%203.2%20Transcript.pdf
In this session from the 2024 PI Conference in Chicago, Dr. Nicole gave a very vulnerable talk about her experiences navigating the healthcare system, both as a physician and as a caregiver for her father.
To learn more, volunteer, or donate, visit primaryimmune.org/donate.
The information, terminology, a
Decoding PI: The science of gene therapy and gene editing
Transcript: https://primaryimmune.org/sites/default/files/01PROOF%20transcription%20gene%20editing%20webinar.pdf
View a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Gene%20editing.pdf
Susan Prockop, MD of Boston Children's Hospital and Harvard Medical School provides an overview and recent updates to gene therapy research for primary immunodeficiency.
Jorey's monthly wrap-up: March 2025
Immune Deficiency Foundation CEO Jorey Berry provides an overview of updates for the community in March 2025.
Undiagnosed: Gaslit and gatekept
Transcript: https://primaryimmune.org/sites/default/files/FOR%20WEB%20Undiagnosed%20Ilana%20Transcript.pdf
TikTok personality and author of "Medical Gaslighting" Ilana Jacqueline has captivates her curious followers with tips on navigating a hostile medical system. Unfortunately, her lessons are often things she's learned the hard way.
Medical gaslighting: https://www.amazon.com/Medical-Gasligh
ChronicXTwenties: Transitioning from pediatric to adult care with Riley and Nick
Transcript: https://primaryimmune.org/sites/default/files/Cx20%201.1%20transcript.pdf.
Immune Deficiency Foundation volunteers Riley and Nick discuss the complications and strategies that helped them transition from pediatric to adult care for their chronic illnesses.
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trus
Jorey's monthly wrap-up: February 2025
Immune Deficiency Foundation president and CEO Jorey Berry provides updates to the community for February 2025
Bold Conversations: Health insurance
Transcript: https://primaryimmune.org/sites/default/files/Bold%20Conversations%203.1%20Transcript.pdf
Jalisa Clark is a Research Fellow at the Center on Health Insurance Reforms (CHIR) at Georgetown University’s McCourt School of Public Policy. Today, she joins Dr. Nicole for a deep dive into inequitable health insurance practices in the U.S.
The information, terminology, and opinions presented
CEO update from Jorey Berry: January 2025
CEO update from Jorey Berry: January 2025
primaryimmune.org/resources
Living well with PI: Mental health and wellness tips
Transcript: https://primaryimmune.org/sites/default/files/Mental%20health%20tips.pdf
Becky Lenning is the owner and clinical director of Yellow Lotus Clinical Services for Healing and Wellness, where she brings over fourteen years of clinical experience as a licensed professional counselor to her practice.
To learn more, volunteer, or donate, visit primaryimmune.org/donate.
Presented with suppo
Undiagnosed: The Businessman
CONTENT WARNING: This episode contains discussions of suicide planning. If you need help, call the National Suicide Hotline at 988.
Transcript: https://primaryimmune.org/sites/default/files/Undiagnosed%20Matt%20Lesser%20Transcript.pdf.
The story of Matt Lesser is one that's marked, of course, by persistence, but also by vulnerability, self reflection, and hard earned humility. Join us as we expl
Q&A: Protecting yourself against COVID, flu, and RSV
TRANSCRIPT: https://primaryimmune.org/sites/default/files/Covid%2C%20Flu%2C%20RSV.pdf
This informative Q&A session offers crucial insights for patients, caregivers, and healthcare professionals. Don't miss this opportunity to enhance your understanding of immunization in the context of PI and learn practical steps for safeguarding health during challenging seasons.
View Dr. Ward's slides: https
Decoding PI: Unraveling the GI Connection
Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20GI%20Connection.pdf
View a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20PI%20and%20GI%20connection.pdf
Peter J. Mannon, M.D. discusses common gastrointestinal symptoms for people with primary immunodeficiency as well, and discusses the interesting link between the two.
The infor
Q&A: Antibody Deficiencies with Dr. Luke Wall
Transcript: https://primaryimmune.org/sites/default/files/LUKE%20WALL%20antibody%20deficiency%20q%26a.pdf
Dr. Luke Wall discusses antibody deficiencies in this Q&A from October 24, 2024.
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: Heartbreakingly beautiful (Part 2)
Transcript: https://primaryimmune.org/sites/default/files/Cx20%20ep%202%20transcript.pdf
In part two of our pilot episode, Heartbreakingly Beautiful, Victoria Medl and Cassie Mummert continue their discussion about hope, support, and learning who to trust with vulnerable truths about their health.
Content warning: This podcast features sensitive subject matter such as mental health, bullying, r
ChronicXTwenties: Heartbreakingly beautiful (Part 1)
Transcript:
https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20ChronicxTwenties%201.1-1.pdf
In this 2-part pilot episode, two members of the Immune Deficiency Foundation’s youth advisory committee -- Cassie Mummert and Victoria Medl – discuss mental health coping strategies, spirituality, and the complications and joys of dating other people with rare diseases.
Content warning: This
Bold Conversations: CGD and medical immigration with Susanna Raj
Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20BC%2002.02%20Susanna%20Raj.pdf
Susanna Raj joins Dr. Nicole to discuss the harrowing story of her childhood immigration from India to receive CGD treatment in the United States and Canada.
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees,
Bold Conversations: Inclusion in practice at the 2024 PI Conference
Transcript: https://primaryimmune.org/sites/default/files/Bold%20Conversations%202.2%20Transcription.pdf
Immune Deficiency Foundation staff members Alissa Creamer and Megan Messick join Dr. Nicole to discuss the inclusions efforts that went into planning the blockbuster 2024 PI conference.
Dr. Nicole's conference session (The Elephant in the Exam Room): https://youtu.be/kn7gM7hsGA8
Bold Conversations: Social determinants of health
Season 2 premiere. Dr. Nicole Rochester discusses social determinants of health, as well as ideas for creating more equitable living conditions for optimal public health.
Follow Dr. Rochester on LinkedIn: https://www.linkedin.com/in/nicole-rochester-md
To learn more about primary immunodeficiency, to donate, or to volunteer, visit https://primaryimmune.org/donate.
The information, terminology,
Ask the expert: PI and fatigue
Dr. Joud Hajjar provides an explanation of the causes and potential treatments for symptoms of fatigue with 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.
TRANSCRIPT: https://primaryimmune.org/sites/default/files/PI%20and%20fatigue%20podcast.pdf
View a pdf of th
The Student: Darcy Gott and the risk of experience
Darcy Gott shares stories of risks involved with having PI as a college student, from mismanaged university health systems to pressure to fit in, and beyond.
Undiagnosed (feat. Dr. Kelley Hagerich): Two Different Traumas
One of the most universal issues those with primary immunodeficiency face in the U.S. is simply navigating a complicated medical system. Getting a referral to an immunologist can feel absolutely insurmountable, even before the inevitable struggles with prior authorizations and annual reviews from insurance companies for life-changing, or even life-saving, medication.
On this episode of Undiagnose
Young adult roundtable: College, mental health, and PI.
**This conversation includes the topics of suicidal and self-harm ideation. We understand that not everyone is capable of hearing such conversations. Viewer discretion is advised.**
This episode of the IDF Podcast is presented with support from Takeda, Horizon Therapeutics, CSL Behring, and Grifols.
On this episode of The IDF Podcast, we turned to six young people who are longtime volunteers, C
ADA-SCID Gene Therapy Update with Dr. Don Kohn
Dr. Don Kohn of UCLA provides an update on emerging gene therapy treatments for ADA-SCID.
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 (feat. The Autism Dad): Father and Son
Rob Gorski shaped the way we discuss parenting for neurodivergent children with his acclaimed blog, The Autism Dad. While all three of his sons are on the autism spectrum, his eldest son, Gavin, is diagnosed with CVID, as well.
In this episode of Undiagnosed, Rob candidly discusses his family's journey, mental health, and the struggle of impossible decisions.
Read Rob's blog at https://www.thea
Bold Conversations Part 5: Health disparities in primary immunodeficiency with Dionne Stalling
Dionne Stalling, founder of Rare and Black, discusses her decades-long journey to PI diagnosis with Dr. Rochester.
October 2023 CEO update with Jorey Berry
Immune Deficiency Foundation CEO Jorey Berry provides an update for October 2023.
Bold Conversations Part 4: Health disparities in PI with Dr. Vivian Hernandez-Trujillo
Drs. Nicole Rochester and Vivian Hernandez-Trujillo discuss disparities in PI, language barriers, rebuilding trust, and the importance of meeting communities where they are.
TRANSCRIPT: https://primaryimmune.org/files/transcription-ep-4-bcpdf
Find Dr. Hernandez-Trujillo on LinkedIn: https://www.linkedin.com/in/vivian-hernandez-trujillo-608207a/
Find Dr. Rochester on LinkedIn: www.linkedin.com/i
Bold Conversations Part 3: The business case for health equity
Dr. Jay Bhatt, Deloitte's Managing Director Center for Health Solutions and Health Equity Institute, joins Dr. Rochester to discuss the business and economic case for investing in health equity.
"US health care can’t afford health inequities": https://www2.deloitte.com/za/en/insights/industry/health-care/economic-cost-of-health-disparities.html
Transcript: https://primaryimmune.org/files/transcr
Fireside chat with Emily V. Gordon
Academy Award-nominated writer and producer Emily V. Gordon joins Tracy Shaw during the 2023 PI Conference to discuss vulnerability, storytelling, limits, and working in Hollywood with a primary immunodeficiency.
Transcript: https://primaryimmune.org/files/transcript-fireside-chat-with-emily-v-gordonpdf
Undiagnosed (ft. Ironmouse): "The Performer"
The saga of popular Twitch personality Ironmouse's life reads much like the anime stories from which she finds inspiration: A talented young woman’s dreams are smashed by illness and circumstance, yet she, in her innate desire to provide for those she loves while making the world a friendlier, sillier, and more musical place, creates a path of her own to unimaginable success.
Transcript: https://
CDawgVA talks history, career, and philanthropy
Popular YouTube and Twitch personality CDawgVA talks about his history growing up in Wales, moving to Japan to pursue voice acting, and how meeting his friend Ironmouse led him to raise money for IDF.
Transcript: https://primaryimmune.org/sites/default/files/Connor%20Podcast%20Transcript.pdf
Your support of IDF helps make programs like this possible. To donate, volunteer, or learn more, visit pr
Transitioning from pediatric to adult care with Dr. Lauren Sanchez
Dr. Lauren Sanchez delivers a talk on the complicated and emotional process of SCID and PI patients transitioning from pediatric to adult care.
Transcript: https://primaryimmune.org/files/edittranscript-transition-carepdf
To view the video of this presentation on YouTube, click here: https://www.youtube.com/watch?v=aKl7tZJiiZc
Click here to view a PDF of this presentation: https://primaryimmune
Undiagnosed Episode 2: "The Gardener"
Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20--%20Undiagnosed%20Episode%202.pdf
A cut on the roof of your mouth. A step in a shallow puddle during a game of backyard football. Potting soil beneath your fingernails. Occurrences like these are, at worst, minor inconveniences for most of the world. However, they can lead to weeks or months of agony for some. This reality is
Community Q&A: Primary Immunodeficiency & Neurological Issues with Dr. Stacey Clardy
Dr. Stacey Clardy (Associate Professor of Neurology at the University of Utah, Salt Lake City VHA) answers questions from the PI community about her clinical study: Neurological Manifestations of CVID.
For a transcript of this podcast, click here: https://primaryimmune.org/sites/default/files/FINAL%20-%20Neuro%20pod%20Q%26A%20transcript.pdf
Dr. Clardy's paper on neurological symptoms in CVID: ht
Bold Conversations Part 2: The roots of medical mistrust among Communities of Color
Dr. Sherita Golden (Vice President and Chief Diversity Officer, Professor at Johns Hopkins Medicine) joins Dr. Rochester to discuss the roots of medical mistrust among Communities of Color – from historical examples such as the Tuskegee Syphilis Study to contemporary and personal examples that marginalized individuals understand all too well.
For a transcript of this episode, click here: https:/
Undiagnosed Episode 1: "The Caretaker"
Series premiere. On average, it takes nine to fifteen years of untreated illness to be diagnosed with and treated for a Primary Immunodeficiency. Recent studies estimate that 70 - 90% of those with PI do not yet have a diagnosis.
You’re listening to Undiagnosed – an Immune Deficiency Foundation podcast. These are the true stories of the harrowing journey to diagnosis.
Imagine an energetic young
Bold Conversations Part One: What is Health Equity?
Series premiere. Dr. Nicole Rochester, IDF's Medical Advisor for Health Equity, discusses the differences between equality and equity, where disparities in health equity can be found, and some of the consequences of a healthcare system that erodes the trust between patients and physicians.
Skilled Nursing Facilities with Dr. M. Elizabeth M. Younger
Dr. M. Elizabeth M. Younger of Johns Hopkins University School of Medicine joins IDF's Lynn Albizo and Stephanie Steele to discuss issues surrounding the use of Skilled Nursing Facilities for patients with Primary Immunodeficiency.
Ask IDF: http://primaryimmune.org/askidf
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of
Community Q&A: Gastrointestinal Issues and Primary Immunodeficiency
Sarah C. Glover DO (Professor of Medicine, University of Mississippi) answers community questions about the relationships between gastrointestinal issues and primary immunodeficiency.
To view the video of Dr. Glover's full presentation, click here: https://www.youtube.com/watch?v=62Ns3X-Ry6Y
Scholarly article: Clinical Presentations, Diagnostic Considerations, and Therapeutic Options for Gastroi
The Connection Between Mental and Physical Health
Dr. John W. Seymour, PhD, LMFT (Professor Emeritus and Distinguished Faculty Scholar at Minnesota State University, Mankato)discusses the links between mental and physical health, and how individuals with PI can best care for minds.
Click here to view a PDF of the presentation: https://primaryimmune.org/sites/default/files/2022%20PI%20Conference-Connection%20Physical%20Mental%20Health-Seymour.pdf
A SCID Compass Retrospective
Alissa Creamer (IDF's Director of Community Services) and Melissa Raspa (RTI's Senior Research Public Health Analyst) discuss the successes of the 4-year SCID Compass program.
SCID Compass Website: https://scidcompass.org/
RTI International: https://www.rti.org/
PI and Travel: https://primaryimmune.org/travelling-with-pi
The information, terminology, and opinions presented in this forum do not
Navigating Access to Quality Care with Primary Immunodeficiency
IDF's own Colleen Brock (RN, Manager of Medical Programs) and Stephanie Steele (Director of Payor Relations and Policy) give a presentation on making sure you, as an individual with PI, have the tools you need to get the care you deserve.
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Returning to In-Person Events
Returning to In-Person Events
IDF's Tammy Black and Alissa Creamer discuss the organization's return to in-person events, as well as the safety protocols and virtual offerings available at the upcoming Walk for PI and PI Conference events.
IDF Clinician Finder: https://primaryimmune.org/clinician-finder
Walk for PI: https://www.walkforpi.org/
Primary Immunodeficiency Conference: https://web.cv
State of the States: 2022 Policy Advocacy Overview
2022 is already more than half over, so we at IDF are reflecting on the goals we’ve set, and the progress we’ve made toward meeting them. On this episode, Jamie Sexton, director of state policy, and Becca Russ, grassroots advocacy specialist, discuss the organization’s advocacy work at a state level so far this year, and the progress we’ve made toward improving the lives of those in the PI communi
Immunoglobulin Replacement Therapy: As Individual As You with Dr. M. Elizabeth M. Younger
M. Elizabeth M. Younger, CRNP, PhD, Assistant Professor of Pediatrics at Johns Hopkins University School of Medicine joined us at a recent IDF forum to discuss immunoglobulin replacement therapy and the various ways it can be tweaked to fit each patient's unique needs.
The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trus
Convalescent Plasma and COVID-19 with Dr. Arturo Casadevall
Dr. Arturo Casadevall is a Bloomberg Distinguished Professor of Molecular Microbiology & Immunology and Infectious Diseases, as well as a recent inductee to the National Academy of Sciences. Today, he joins us to discuss his research into convalescent plasma in the fight against COVID-19.
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