A SCID Compass Retrospective

Immune Deficiency Foundation

#Fitness #Primary Immunodeficiency Q & A: an IDF Podcast #Immune Deficiency Foundation

44:09

When a young Eva Kollisch arrives as a refugee in New York in 1940, she finds a community among socialists who share her values and idealism. She soon discovers ‘the cause’ isn’t as idyllic as it seems. Little does she know this is the beginning of a lifelong commitment to activism and her determination to create radical change in ways that include belonging, love and one's full self. In addition to Eva Kollisch’s memoirs Girl in Movement (2000) and The Ground Under My Feet (2014), LBI’s collections include an oral history interview with Eva conducted in 2014 and the papers of Eva’s mother, poet Margarete Kolllisch, which document Eva’s childhood experience on the Kindertransport. Learn more at www.lbi.org/kollisch . Exile is a production of the Leo Baeck Institute , New York | Berlin and Antica Productions . It’s narrated by Mandy Patinkin. Executive Producers include Katrina Onstad, Stuart Coxe, and Bernie Blum. Senior Producer is Debbie Pacheco. Associate Producers are Hailey Choi and Emily Morantz. Research and translation by Isabella Kempf. Sound design and audio mix by Philip Wilson, with help from Cameron McIver. Theme music by Oliver Wickham. Voice acting by Natalia Bushnik. Special thanks to the Kollisch family for the use of Eva’s two memoirs, “Girl in Movement” and “The Ground Under My Feet”, the Sophia Smith Collection at Smith College and their “Voices of Feminism Oral History Project”, and Soundtrack New York.…

2 года назад 25:07

MP3•Главная эпизода

Alissa Creamer (IDF's Director of Community Services) and Melissa Raspa (RTI's Senior Research Public Health Analyst) discuss the successes of the 4-year SCID Compass program. SCID Compass Website: https://scidcompass.org/ RTI International: https://www.rti.org/ PI and Travel: https://primaryimmune.org/travelling-with-pi The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.

74 эпизодов

A SCID Compass Retrospective

Immune Deficiency Foundation

published 2 года назад

MP3•Главная эпизода

74 эпизодов

#Fitness #Primary Immunodeficiency Q & A: an IDF Podcast #Immune Deficiency Foundation

All episodes

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

8 дней назад37:53

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.…

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

9 дней назад5:51

5:51

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

1
Bold Conversations: Health insurance 43:18

16 дней назад43:18

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.…

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

год назад3:58

3:58

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

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

год назад1:21:20

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.…

1
Undiagnosed: The Businessman 26:09

год назад26:09

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.…

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

год назад30:43

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.…

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

год назад1:16:05

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.…

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

год назад32:42

32:42

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

год назад1:13:06

1:13:06

Transcript: https://primaryimmune.org/sites/default/files/Cx20%20ep%202%20transcript.pdf In 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 subject matter such as mental health, bullying, religion, suicide, and confronting mortality. The views expressed in this podcast do not necessarily reflect the views of the Immune Deficiency Foundation, its employees, sponsors, or Board of Trustees. Listener discretion is advised.…

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

год назад1:01:50

1:01:50

Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20-%20ChronicxTwenties%201.1-1.pdf In 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 people with rare diseases. Content warning: This podcast features sensitive subject matter such as mental health, bullying, religion, suicide, and confronting mortality. The views expressed in this podcast do not necessarily reflect the views of the Immune Deficiency Foundation, its employees, sponsors, or Board of Trustees. Listener discretion is advised.…

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

год назад42:57

42:57

Transcript: https://primaryimmune.org/sites/default/files/Transcript%20-%20BC%2002.02%20Susanna%20Raj.pdf Susanna 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 reflect the views of IDF, its Board of Trustees, sponsors, or donors. Read Susanna's story: https://primaryimmune.org/resources/news-articles/determined-keep-moving-forward…

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

год назад36:46

36:46

Transcript: https://primaryimmune.org/sites/default/files/Bold%20Conversations%202.2%20Transcription.pdf Immune 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 Room): https://youtu.be/kn7gM7hsGA8…

1
Bold Conversations: Social determinants of health 22:53

год назад22:53

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-md To learn more about primary immunodeficiency, to donate, or to volunteer, visit https://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.…

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

год назад1:00:01