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Tiffany Yu is the CEO & Founder of Diversability, an award-winning social enterprise to elevate disability pride; the Founder of the Awesome Foundation Disability Chapter, a monthly micro-grant that has awarded $92.5k to 93 disability projects in 11 countries; and the author of The Anti-Ableist Manifesto: Smashing Stereotypes, Forging Change, and Building a Disability-Inclusive World. As a person with visible and invisible disabilities stemming from a car crash, Tiffany has built a career on disability solidarity. Now that she has found success, she works to expand a network of people with disabilities and their allies to decrease stigmas around disability and create opportunities for disabled people in America. Episode Chapters 0:00 Intro 1:26 When do we choose to share our disability stories? 4:12 Jay’s disability story 8:35 Visible and invisible disabilities 13:10 What does an ally to the disability community look like? 16:34 NoBodyIsDisposable and 14(c) 21:26 How does Tiffany’s investment banking background shape her advocacy? 27:47 Goodbye and outro For video episodes, watch on www.youtube.com/@therudermanfamilyfoundation Stay in touch: X: @JayRuderman | @RudermanFdn LinkedIn: Jay Ruderman | Ruderman Family Foundation Instagram: All About Change Podcast | Ruderman Family Foundation To learn more about the podcast, visit https://allaboutchangepodcast.com/…
Content provided by Immune Deficiency Foundation. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Immune Deficiency Foundation or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ppacc.player.fm/legal.
Content provided by Immune Deficiency Foundation. All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by Immune Deficiency Foundation or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ppacc.player.fm/legal.
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…
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.…
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.
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.…
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 information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. LINKS: https://primaryimmune.org/get-involve... www.medicare.gov www.medicaid.gov www.healthcare.gov www.usa.gov/state-health www.naccho.org/membership/lhd-directory https://www.kff.org/ www.commonwealthfund.org www.accessiahealth.org www.patientadvocate.org www.triagehealth.org www.rarediseasediversity.org/rddc-get-involved www.patientsrising.org www.rarediseases.org/get-involved/…
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, 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/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. 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. LINKS: SCID-X1 Gene Therapy Via Intravenous Lentiviral (Ivlv-X1) Injection: https://clinicaltrials.gov/study/NCT03217617?term=NCT03217617&rank=1 Phase I/II Trial of Lentiviral Gene Transfer for SCID-X1 with Low Dose Targeted Busulfan Conditioning: https://clinicaltrials.gov/study/NCT03311503?term=NCT03311503&rank=1 Lentiviral Gene Transfer for Treatment of Children Older Than Two Years of Age With X-Linked Severe Combined Immunodeficiency (XSCID): https://clinicaltrials.gov/study/NCT01306019?term=NCT01306019&rank=1 Pilot and Feasibility Study of Hematopoietic Stem Cell Gene Transfer for the Wiskott-Aldrich Syndrome: https://clinicaltrials.gov/study/NCT01410825?term=NCT01410825&rank=1 Gene Therapy for WAS: https://clinicaltrials.gov/study/NCT01347346?term=NCT01347346&limit=10&rank=1 Gene Therapy for Wiskott-Aldrich Syndrome (WAS): https://clinicaltrials.gov/study/NCT01347242?term=NCT01347242&limit=10&rank=1 Study of Gene Therapy Using a Lentiviral Vector to Treat X-linked Chronic Granulomatous Disease: https://clinicaltrials.gov/study/NCT02234934?term=NCT02234934&limit=10&rank=1 Gene Therapy for X-linked Chronic Granulomatous Disease (X-CGD) (CGD): https://clinicaltrials.gov/study/NCT01855685?term=NCT01855685&limit=10&rank=1 pCCLCHIM-p47 (Lentiviral Vector Transduced CD34 Plus Cells) in Patients With p47 Autosomal Recessive Chronic Granulomatous Disease (AR-CGD): https://clinicaltrials.gov/study/NCT06253507?term=NCT06253507&limit=10&rank=1 Lentiviral Gene Therapy for p47 AR-CGD: https://clinicaltrials.gov/study/NCT05207657?term=NCT05207657&limit=10&rank=1 Base Editing for Mutation Repair in Hematopoietic Stem & Progenitor Cells for X-Linked Chronic Granulomatous Disease: https://clinicaltrials.gov/study/NCT06325709?term=NCT06325709&limit=10&rank=1 A Study of the Safety and Efficacy of Prime Editing (PM359) in Participants with P47phox Autosomal Recessive Chronic Granulomatous Disease (CGD): https://clinicaltrials.gov/study/NCT06559176?term=NCT06559176&limit=10&rank=1…
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-Gaslighting-Deserve-System-Makes/dp/1637745397/ref=sr_1_1?crid=FROEQYELD5A2&dib=eyJ2IjoiMSJ9.M8ujTsCfx7OiEXXjoBlASPHIHCak2xLFGUqPz0W4cT8mG8uwVYRda1tkP7HakgUxdEFnScIS0cB26F31dbVvO0h7ZgT4JYSRGjXu748gyAbLvQDLWS9GCeaqcq9WdTDY7tvBVHkiZByaOIKRKwxnj4_EPRzINv_YcaZlbb1iag998ueBekHfgt-gWTEvFygODrVHfYIHN3Bs_k5MwmTUJazTX7PWa59EQABi8lESigA.OGwcZUHvLJsR2wvT-fVsYULlFTgqnjYnpXEPbw37A-A&dib_tag=se&keywords=medical+gaslighting&qid=1743001146&sprefix=medical+gaslighting%2Caps%2C114&sr=8-1 Follow Ilana on TikTok: https://www.tiktok.com/@ilana_jacqueline The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. Support for the Immune Deficiency Foundation programs for undiagnosed and underserved populations is provided by CSL Behring, CVS Specialty Pharmacy, Grifols, Pharming, and Merck & Co.…
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 Trustees, sponsors, or donors. Get involved: https://primaryimmune.org/get-involved/volunteer.…
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 in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.…
CEO update from Jorey Berry: January 2025 primaryimmune.org/resources
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