Community Q&A: Primary Immunodeficiency & Neurological Issues With Dr. Stacey Clardy Immune Deficiency Foundation podcast

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

לפני 6 ימים4:06

4:06

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.

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

לפני 8 ימים1:05:36

1:05:36

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.…

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

לפני 12 ימים1:04:22

1:04:22

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/…

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

לפני 15 ימים55:37

55:37

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.…

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

לפני 30 ימים1:14:45

1:14:45

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…

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

לפני 5 weeks2:31

2:31

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

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Undiagnosed: Gaslit and Gatekept 48:03

לפני 6 weeks48:03

48:03

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.…

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

לפני 9 weeks37:53

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 necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. Get involved: https://primaryimmune.org/get-involved/volunteer.…

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

לפני 10 weeks5:51

5:51

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

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Bold Conversations: Health insurance 43:18

לפני 11 weeks43:18

43:18

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.…

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CEO update from Jorey Berry: January 2025 3:58

לפני 15 weeks3:58

3:58

CEO update from Jorey Berry: January 2025 primaryimmune.org/resources

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

לפני 15 weeks1:21:20

1:21:20

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.…

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Undiagnosed: The Businessman 26:09

לפני 18 weeks26:09

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, 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.…

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

לפני 21 weeks30:43

30:43

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

לפני 22 weeks1:16:05

1:16:05

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 information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. To learn more, volunteer, or donate, visit primaryimmune.org/donate.…

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Immune Deficiency Foundation « » Community Q&A: Primary Immunodeficiency & Neurological Issues with Dr. Stacey Clardy

Community Q&A: Primary Immunodeficiency & Neurological Issues with Dr. Stacey Clardy

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Community Q&A: Primary Immunodeficiency & Neurological Issues with Dr. Stacey Clardy