Best Immune Deficiency Foundation Podcasts (2025)

1
Lunch & Learn: Understanding genetic variants in APDS 45:16

5d ago45:16

45:16

Transcript: https://primaryimmune.org/sites/default/files/APDS%20Lunch%20and%20Learn%20transcript.pdfDr. 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%2…

1
Activating The Content Creator Community Through P2P with The Immune Deficiency Foundation’s Aimee Yrlas-Simpson & Angela Ridenour 39:13

19d ago39:13

39:13

Celebrity gossip magazines love to remind us: "Stars — they’re just like us!" And while the world of digital creators and streamers can feel like a distant universe, the truth is that these online personalities aren’t so different from the rest of us. As P2P fundraising increasingly intersects with the creator community, it’s easy to view streamers…

1
Growing Your “Share Of Community” Through P2P with AIDS Foundation Chicago’s Jonathan Harris & Christina Robinson 31:10

5d ago31:10

31:10

Marketers love to throw around terms like “share of voice” and “share of wallet” - ways to track how much attention or spending a brand commands. But in peer-to-peer fundraising, there’s a different kind of share that matters more. Growing your “share of community” is about going deeper with the people closest to your cause - the ones who feel seen…

1
Jorey's monthly wrap-up: May 2025 3:29

17d ago3:29

3:29

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20May%20CEO%20Update.pdfImmune Deficiency Foundation CEO Jorey Berry provides an update for the month of May, 2025.By Immune Deficiency Foundation

1
Assessing Opportunities For New Market Growth with The ALS Association’s Cliff Whitlock 31:29

1M ago31:29

31:29

In the early days of peer-to-peer fundraising events, one of the fastest ways to grow a program was to launch events in new markets. But many organizations scaled back over time, whether due to strategic shifts or limited resources. So what happens when it’s time to grow again? How do you evaluate new opportunities and ensure long-term success? Exp…

1
Problems in practice: Insurance with Dr. Marcus Shaker 31:49

1M ago31:49

31:49

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20Shaker.pdfDr. 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 pay…

1
Jorey's monthly wrap-up: April 2025 4:06

2M ago4:06

4:06

Transcript: https://primaryimmune.org/sites/default/files/April%20CEO%20Transcript.pdfImmune Deficiency Foundation president and CEO Jorey Berry provides updates to the PI community.By Immune Deficiency Foundation

1
Inspiring Your P2P Community With A Bold, Audacious Goal With Pat Morrissey, Team Human Powered Potential & Liz Deimer, The Michael J. Fox Foundation For Parkinson’s Research 45:21

2M ago45:21

45:21

In the P2P fundraising world, we often look to the spark of organic, supporter-led moments like the Ice Bucket Challenge as examples of what’s possible when passion meets purpose. But when lightning strikes, are you ready to catch it? This episode dives into one such moment: when four friends, Pat Morissey, Brendan Cusick, Peter Durso, and Scott Fo…

1
SPECIAL LOOK: Advocacy Day 2025 Training 1:05:36

2M ago1:05:36

1:05:36

Transcript: https://primaryimmune.org/sites/default/files/Advocacy%20Day%20Training%20Transcript.pdfThis 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 episo…

1
Living well with PI: Impact of federal policy changes on the PI community 1:04:22

2M ago1:04:22

1:04:22

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Legislative%20webinar.pdfThis 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 …

1
Bold Conversations: The elephant in the exam room 55:37

2M ago55:37

55:37

https://primaryimmune.org/sites/default/files/Bold%20Conversations%203.2%20Transcript.pdfIn 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 primaryimmun…

1
Creating Synergy Across A Growing P2P Portfolio with Princess Margaret Cancer Foundation’s Steve Merker 28:54

2M ago28:54

28:54

In the early days of the P2P industry, most nonprofits concentrated on one tentpole P2P event—typically a walk or cycling program—which allowed them to align staffing, branding, and resources around a single, large-scale initiative, focusing on broad market appeal. However, as the industry has evolved, so too has the need to diversify offerings—bot…

1
Decoding PI: The science of gene therapy and gene editing 1:14:45

2M ago1:14:45

1:14:45

Transcript: https://primaryimmune.org/sites/default/files/01PROOF%20transcription%20gene%20editing%20webinar.pdfView a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20Gene%20editing.pdfSusan Prockop, MD of Boston Children's Hospital and Harvard Medical School provides an overview and recent updates to gene t…

1
Jorey's monthly wrap-up: March 2025 2:31

3M ago2:31

2:31

Immune Deficiency Foundation CEO Jorey Berry provides an overview of updates for the community in March 2025.By Immune Deficiency Foundation

1
Undiagnosed: Gaslit and Gatekept 48:03

3M ago48:03

48:03

Transcript: https://primaryimmune.org/sites/default/files/FOR%20WEB%20Undiagnosed%20Ilana%20Transcript.pdfTikTok 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 gasli…

1
ChronicXTwenties: Transitioning from pediatric to adult care with Riley and Nick 37:53

4M ago37:53

37:53

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 necessari…

1
Jorey's monthly wrap-up: February 2025 5:51

4M ago5:51

5:51

Immune Deficiency Foundation president and CEO Jorey Berry provides updates to the community for February 2025By Immune Deficiency Foundation

1
Bold Conversations: Health insurance 43:18

4M ago43:18

43:18

Transcript: https://primaryimmune.org/sites/default/files/Bold%20Conversations%203.1%20Transcript.pdfJalisa 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 inf…

1
Living well with PI: Mental health and wellness tips 1:21:20

5M ago1:21:20

1:21:20

Transcript: https://primaryimmune.org/sites/default/files/Mental%20health%20tips.pdfBecky 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 p…

1
CEO update from Jorey Berry: January 2025 3:58

5M ago3:58

3:58

CEO update from Jorey Berry: January 2025primaryimmune.org/resourcesBy Immune Deficiency Foundation

1
Undiagnosed: The Businessman 26:09

6M ago26:09

26:09

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…

1
Confronting Societal Stigma Through P2P Fundraising with Shatterproof’s Shannon Greene 31:23

6M ago31:23

31:23

Peer-to-peer fundraising inherently involves a degree of vulnerability—sharing your personal story and hoping others will respond with support and donations. But what happens when the story is difficult to tell? When the cause itself is stigmatized? Or when you’re unsure how your loved ones will react? This week on the P2P Soapbox, Shannon Greene, …

1
Q&A: Protecting yourself against COVID, flu, and RSV 30:43

6M ago30:43

30:43

TRANSCRIPT: https://primaryimmune.org/sites/default/files/Covid%2C%20Flu%2C%20RSV.pdfThis 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 chal…

1
Decoding PI: Unraveling the GI Connection 1:16:05

6M ago1:16:05

1:16:05

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20GI%20Connection.pdfView a PDF of this presentation: https://primaryimmune.org/sites/default/files/FOR%20WEB%20-%20PI%20and%20GI%20connection.pdfPeter J. Mannon, M.D. discusses common gastrointestinal symptoms for people with primary immunodeficiency as well, and discusses th…

1
Navigating Crisis During Event Week with Lurie Children’s Ted McCartan 33:35

6M ago33:35

33:35

The seasoned event fundraising professional knows that in-person events often bring unexpected challenges—whether it’s extreme weather, political unrest or medical emergencies. While these worst-case scenarios can take many forms, the key to navigating them successfully lies in two essential elements: a strong external communication plan and an int…

1
Casting A Wider Net For P2P Growth with the American Diabetes Association’s Megan Gavin 20:47

7M ago20:47

20:47

As many P2P programs strive to expand, organizations often grapple with a core question: should they focus resources on deepening engagement with current supporters or invest in acquiring new ones? The answer isn’t always one strategy over the other—it’s important to consider your mission’s scope. For causes that directly impact millions, investing…

1
Q&A: Antibody Deficiencies with Dr. Luke Wall 32:42

7M ago32:42

32:42

Transcript: https://primaryimmune.org/sites/default/files/LUKE%20WALL%20antibody%20deficiency%20q%26a.pdfDr. 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.…

1
ChronicXTwenties: Heartbreakingly beautiful (Part 2) 1:13:06

8M ago1:13:06

1:13:06

Transcript: https://primaryimmune.org/sites/default/files/Cx20%20ep%202%20transcript.pdfIn 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 sub…

1
Rebroadcast • Prioritizing Ethical Storytelling In Peer-to-Peer Events with Covenant House International’s Meghan Coan & Colleen Veldt 35:06

8M ago35:06

35:06

Have you ever stopped to question if your fundraising messaging is ethical? Despite our best intentions as professional fundraisers, it is crucial for us to recognize that certain traditional fundraising methods no longer hold up under scrutiny in 2023. In our efforts to showcase the serious need for donations with often sad, evocative imagery, we …

1
ChronicXTwenties: Heartbreakingly beautiful (Part 1) 1:01:50

8M ago1:01:50

1:01:50

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20ChronicxTwenties%201.1-1.pdfIn 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 pe…

1
Bold Conversations: CGD and medical immigration with Susanna Raj 42:57

8M ago42:57

42:57

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20BC%2002.02%20Susanna%20Raj.pdfSusanna 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 re…

1
Mobilizing The Next Generation Of Fundraisers with the Canadian Cancer Society’s Laurie Benner 25:34

9M ago25:34

25:34

One of the most pressing questions facing the peer-to-peer (P2P) fundraising industry is, "How do we better engage the next generation of fundraisers?" With each generational shift, it can be daunting to understand the motivations of the emerging group and adapt to their preferences. Gen Z and young Millennials, now aged 12 to 30, are no exception.…

1
Curating Space For Emotional Healing At P2P Events with Colorectal Cancer Alliance's Chelsea Edwards 32:36

9M ago32:36

32:36

Champions of the peer-to-peer industry understand that P2P events go far beyond just fundraising, raising awareness or building community. For those directly affected by our causes, these events can provide a powerful outlet for emotional healing—a meaningful way to take action, mourn, celebrate and feel less isolated in their struggles. However, t…

1
Bold Conversations: Inclusion in practice at the 2024 PI Conference 36:46

10M ago36:46

36:46

Transcript: https://primaryimmune.org/sites/default/files/Bold%20Conversations%202.2%20Transcription.pdfImmune 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 Roo…

1
Expanding Your Peer-to-Peer Fundraising Portfolio with City of Hope’s Robyn Mendez 36:34

10M ago36:34

36:34

Expanding your peer-to-peer (P2P) portfolio is vital for long-term growth and sustainability. By diversifying P2P revenue streams, you can not only raise more funds but also attract new supporters, foster a more inclusive community, and reduce financial risk. The challenge often lies in determining the right timing and approach for expansion. Is yo…

1
Tapping Into The World of Gamers, Streamers & Influencers with Stand Up To Cancer’s Andy Steig 34:40

10M ago34:40

34:40

It's no exaggeration to say that livestreaming and influencer marketing have revolutionized both the entertainment industry and consumer behavior. With the advent of new technologies and the rise of content creators, many nonprofits are grappling with how to integrate these innovations into their fundraising efforts. While content creators present …

1
Partnering With Fundraisers Who Go Above & Beyond with Scott & Katy Freitag and ZERO Prostate Cancer's Tracy Cameron 48:00

11M ago48:00

48:00

As peer-to-peer leaders, we dedicate considerable effort to planning events, building resources, and crafting communications—all aimed at inspiring our constituents to fundraise. Our systems are designed to facilitate mass participation. But what happens when an individual reaches out with their own ambitious fundraising goals, seeking to go above …

1
Bold Conversations: Social determinants of health 22:53

11M ago22:53

22:53

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-mdTo learn more about primary immunodeficiency, to donate, or to volunteer, visit https://primaryimmu…

1
Empowering Today's Volunteer Leaders with American Cancer Society's Bryan Sherwood 29:18

1y ago29:18

29:18

Long before nonprofit organizations had local offices and national program leads, peer-to-peer fundraising thrived through the dedication of volunteer leaders passionate about raising money for causes they loved. While volunteer management remains a critical strategy for the success of our events, it is often an elusive task for many organizations.…

1
Understanding The Lifetime Value Of Your P2P Fundraisers with Children's Hospital of Philadelphia's Jon Thompson & Kevin McMahon 41:57

1y ago41:57

41:57

Those of us deeply entrenched in the world of peer-to-peer fundraising have long recognized that one of the greatest strengths of our events and campaigns lies within the sense of community and shared experiences we create for our supporters. However, in an increasingly data-driven environment, quantifying the return on investment (ROI) for cultiva…

1
Reconnecting Your P2P Strategies To Your “Why” With American Heart Association’s Kim Slone 27:02

1y ago27:02

27:02

Being a leader in the peer-to-peer world can feel like a whirlwind of demands. Stay relevant. Innovate. Stick to the fundamentals. Explore new revenue streams. Prioritize effectively. Cultivate meaningful relationships. It’s a lot to juggle and can leave even the most seasoned leader feeling a bit dizzy. In the midst of this whirlwind, it’s crucial…

1
Centering Your Fundraisers’ Needs In Your P2P Communication With World Vision USA’s Lyndsey Deane Ratchford 38:50

1y ago38:50

38:50

In the world of peer-to-peer fundraising, endurance events present a distinct set of challenges and opportunities. These events typically entail a much longer engagement window, offering both the chance to cultivate enduring relationships with participants and the hurdle of sustaining their involvement over an extended period of time. For many part…

1
Igniting A Mission-Driven Peer-to-Peer Community With Cure SMA’s Jesse Aynes & Kyle Houlihan 39:05

1y ago39:05

39:05

It seems obvious that peer-to-peer fundraising events would be designed with the organization's missions in mind. However, amidst the critical logistics decisions, competing messaging priorities and the influence of multiple stakeholders, prioritizing a mission-centric approach can inadvertently take a back seat. In this episode, Cure SMA’s Jesse A…

1
Ask the expert: PI and fatigue 1:00:01

1y ago1:00:01

1:00:01

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%2…

1
Accelerating P2P Growth With Data-Driven Strategies With NAMI’s Mary Sorensen & Morgan Sills 36:54

1+ y ago36:54

36:54

At its core, peer-to-peer fundraising is built on relationship-building and community - it’s all about the people. And at the same time, the most successful fundraising campaigns are equally driven by the numbers. With hundreds of events, thousands of participants and an extensive supporter base, even minor adjustments can have an exponential impac…

1
Recapping The 2023 P2P Top 30, Benchmarks & Trends 9:31

1+ y ago9:31

9:31

At the 2024 Peer-to-Peer Professional Forum conference in Philadephia, we unveiled the P2P Fundraising Top 30 programs for both the U.S. and Canada. This study compiled data from 134 programs, making it the largest P2P study ever. In this special solo episode, P2PPF’s Marcie Maxwell digs into the newly unveiled 2023 Top 30, highlighting top success…

1
The Student: Darcy Gott and the risk of experience 15:49

1+ y ago15:49

15:49

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.By Immune Deficiency Foundation

1
Creating A New Blueprint For DIY Fundraising with Ovarian Cancer Canada’s Becky Mitts 33:06

1+ y ago33:06

33:06

In the realm of peer-to-peer fundraising, DIY campaigns often receive less attention and investment compared to more traditional programs. The term "Do It Yourself" fundraising may suggest a hands-off approach to organizers. However, this misconception overlooks a significant opportunity. Frequently, individuals who initiate their own fundraising e…

1
Unlocking Growth Through A Strong Partnership With Marketing With National MS Society’s Marisa Hull & Peter Fryer 39:38

1+ y ago39:38

39:38

One of the most common refrains that echoes through the world of peer-to-peer fundraising is that our friends in Marketing just don’t understand the world of Development. (And it’s pretty easy to assume that the sentiment cuts both ways.) However, with the evolving landscape of revenue goals, shifting supporter expectations and advancements in tech…

1
Raising The Bar For Your Peer-to-Peer Fundraisers with Pan-Mass Challenge’s Jarrett Collins 37:56

1+ y ago37:56

37:56

As professional fundraisers, we often find ourselves playing the role of the “proud beggar”, grateful for every donation we receive, no matter the size. While that is a worthy and admirable approach, it can do a disservice to our participants and to the missions we champion. Our peer-to-peer participants aren’t just signing up to walk or ride or ru…

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Immune Deficiency Foundation Podcasts

Podcasts Worth a Listen

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