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What’s the secret to lasting friendships? How does queer community show up through the ebbs and flows of life? And what’s the REAL story behind the “YMCA” song? In the first episode of Silver Linings, The Old Gays dive into an essential part of queer life: chosen family. They discuss the vital love, support, and sense of belonging that community provides, especially during life's toughest moments. They open up about what “queer” means to them, how chosen family has impacted their lives, and how to maintain close bonds over time–including their love for each other! “We’ve come a long way, baby.” Family isn’t just what you’re born with; it’s the people who show up, shape you, and stick around. See omnystudio.com/listener for privacy information.…
Innhold levert av Immune Deficiency Foundation. Alt podcastinnhold, inkludert episoder, grafikk og podcastbeskrivelser, lastes opp og leveres direkte av Immune Deficiency Foundation eller deres podcastplattformpartner. Hvis du tror at noen bruker det opphavsrettsbeskyttede verket ditt uten din tillatelse, kan du følge prosessen skissert her https://no.player.fm/legal.
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.
Innhold levert av Immune Deficiency Foundation. Alt podcastinnhold, inkludert episoder, grafikk og podcastbeskrivelser, lastes opp og leveres direkte av Immune Deficiency Foundation eller deres podcastplattformpartner. Hvis du tror at noen bruker det opphavsrettsbeskyttede verket ditt uten din tillatelse, kan du følge prosessen skissert her https://no.player.fm/legal.
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.
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.…
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 support from Takeda and CSL Behring.…
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 explore the impossible crux of mental health, splintered family, and primary immunodeficiency. Your support of the Immune Deficiency Foundation helps ensure people like Matt have what they need to thrive with PI. Please visit primaryimmune.org/donate. 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. Support for the Immune Deficiency Foundation programs for undiagnosed and underserved populations is provided by CSL Behring.…
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://primaryimmune.org/sites/default/files/Ward%20COVID_flu_RSV%20091924.pdf View Dr. Keller's slides: https://primaryimmune.org/sites/default/files/IDF%20Vaccines%20PID%202024-%20Keller.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.…
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