最佳Immune Deficiency Foundation播客 (2025)

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Foundation Focus | August 2025 2:31

24天之前2:31

2:31

Transcript: file:///E:/2025/Podcasts/CEO%20Updates/Transcript%20-%20FF%20Aug%202025.pdfCEO 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.由Immune Deficiency Foundation

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Lunch and Learn: HLH with Dr. Michael Jordan 56:36

28天之前56:36

56:36

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20HLH.pdfDr. 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.pdfTo learn more, volunteer, or donate, visit primaryimmune…

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Undiagnosed: The wounds that won't close 11:15

30天之前11:15

11:15

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/compromis…

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Foundation Focus | July 2025 3:43

大约1年之前3:43

3:43

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.*…

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Bold Conversations: Misinformation with Dr. Cynthia Baur 39:45

大约1年之前39:45

39:45

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Bold%20Conversations%20-%20Misinformation.pdfCynthia 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 He…

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ChronicXTwenties: Demystifying advocacy 34:29

大约1年之前34:29

34:29

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20Chronic%20Twenties%20Advocacy.pdfImmune 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…

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Foundation Focus: June 2025 update with CEO Jorey Berry 2:55

大约1年之前2:55

2:55

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.pdfImmune Deficiency Foundation CEO Jorey Berry discusses our new text message program, an upcoming Lunch & Learn, and an exciting new volunteer opportunity.…

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

大约1年之前45:16

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…

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

大约1年之前3:29

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.由Immune Deficiency Foundation

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

大约1年之前31:49

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…

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

大约1年之前4:06

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.由Immune Deficiency Foundation

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

大约1年之前1:05:36

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…

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

大约1年之前1:04:22

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 …

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

大约1年之前55:37

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…

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

大约1年之前1:14:45

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…

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

大约1年之前2:31

2:31

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

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Undiagnosed: Gaslit and Gatekept 48:03

大约1年之前48:03

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…

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

大约1年之前37:53

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…

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

大约1年之前5:51

5:51

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

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Bold Conversations: Health insurance 43:18

大约1年之前43:18

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…

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CEO update from Jorey Berry: January 2025 3:58

大约1年之前3:58

3:58

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

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

大约1年之前1:21:20

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…

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Undiagnosed: The Businessman 26:09

大约1年之前26:09

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…

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

大约1年之前30:43

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…

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

大约1年之前1:16:05

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…

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

大约1年之前32:42

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.…

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

大约1年之前1:13:06

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…

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

大约1年之前1:01:50

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…

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

大约1年之前42:57

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…

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

大约1年之前36:46

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…

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Bold Conversations: Social determinants of health 22:53

大约1年之前22:53

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…

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

大约1年之前1:00:01

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…

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

2年之前15:49

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.由Immune Deficiency Foundation

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Undiagnosed (feat. Dr. Kelley Hagerich): Two Different Traumas 24:15

2年之前24:15

24:15

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-…

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Young adult roundtable: college, mental health, and PI. 52:19

2年之前52:19

52:19

**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 s…

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ADA-SCID Gene Therapy Update with Dr. Don Kohn 1:05:05

2年之前1:05:05

1:05:05

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.由Immune Deficiency Foundation

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Undiagnosed (feat. The Autism Dad): Father and Son 49:04

2年之前49:04

49:04

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…

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Bold Conversations Part 5: Health disparities in primary immunodeficiency with Dionne Stalling 40:58

2年之前40:58

40:58

Dionne Stalling, founder of Rare and Black, discusses her decades-long journey to PI diagnosis with Dr. Rochester.由Immune Deficiency Foundation

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October 2023 CEO update with Jorey Berry 4:14

2年之前4:14

4:14

Immune Deficiency Foundation CEO Jorey Berry provides an update for October 2023.由Immune Deficiency Foundation

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Bold Conversations Part 4: Health disparities in PI with Dr. Vivian Hernandez-Trujillo 35:39

2年之前35:39

35:39

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-bcpdfFind Dr. Hernandez-Trujillo on LinkedIn: https://www.linkedin.com/in/vivian-hernandez-trujillo-608207a/Find D…

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Bold Conversations Part 3: The business case for health equity 36:12

2年之前36:12

36:12

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.htmlTrans…

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Fireside chat with Emily V. Gordon 38:34

2年之前38:34

38:34

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…

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Undiagnosed (ft. Ironmouse): "The Performer" 1:00:42

2年之前1:00:42

1:00:42

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 …

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CDawgVA talks history, career, and philanthropy 46:10

2年之前46:10

46:10

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.pdfYour support of IDF helps make programs like this possible.…

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Transitioning from pediatric to adult care with Dr. Lauren Sanchez 55:55

2年之前55:55

55:55

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-carepdfTo view the video of this presentation on YouTube, click here: https://www.youtube.com/watch?v=aKl7tZJiiZcClick here to view a PDF…

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Undiagnosed Episode 2: "The Gardener" 21:17

2年之前21:17

21:17

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20--%20Undiagnosed%20Episode%202.pdfA 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 we…

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Community Q&A: Primary Immunodeficiency & Neurological Issues with Dr. Stacey Clardy 59:36

2年之前59:36

59:36

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.pdfDr. Clard…

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Bold Conversations Part 2: The roots of medical mistrust among Communities of Color 39:58

2年之前39:58

39:58

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…

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Undiagnosed Episode 1: "The Caretaker" 27:27

3年之前27:27

27:27

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 jo…

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Bold Conversations Part One: What is Health Equity? 12:40

3年之前12:40

12:40

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.由Immune Deficiency Foundation

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