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IDFA Podcast

International Documentary Festival Amsterdam

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Welcome to the podcast of IDFA. The IDFA podcast contains post screening Q&A's, Doc Talks and Industry Talks Sessions. Please check out other recordings of talks and events of IDFA at idfa.nl and subscribe to the podcast to stay up to date.
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The IDF Podcast

Immune Deficiency Foundation

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This podcast is a service of the Immune Deficiency Foundation, or IDF, 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 miniseries on The IDF Podcast that explores the harsh realities of health equity in the United States. Hosted by Dr. Nicole Rochester. "Undiagnosed" is a narrative docuseries on The IDF Podcast that tells the true stories of PI patients and their ...
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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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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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**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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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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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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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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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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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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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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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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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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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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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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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.저자 Immune Deficiency Foundation
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Dr. M. Elizabeth M. Younger of Johns Hopkins University School of Medicine joins IDF's Lynn Albizo and Stephanie Steele to discuss issues surrounding the use of Skilled Nursing Facilities for patients with Primary Immunodeficiency. Ask IDF: http://primaryimmune.org/askidfThe information, terminology, and opinions presented in this forum do not nece…
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Sarah C. Glover DO (Professor of Medicine, University of Mississippi) answers community questions about the relationships between gastrointestinal issues and primary immunodeficiency.To view the video of Dr. Glover's full presentation, click here: https://www.youtube.com/watch?v=62Ns3X-Ry6YScholarly article: Clinical Presentations, Diagnostic Consi…
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Dr. John W. Seymour, PhD, LMFT (Professor Emeritus and Distinguished Faculty Scholar at Minnesota State University, Mankato)discusses the links between mental and physical health, and how individuals with PI can best care for minds.Click here to view a PDF of the presentation: https://primaryimmune.org/sites/default/files/2022%20PI%20Conference-Con…
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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-piThe information, terminology, a…
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IDF's own Colleen Brock (RN, Manager of Medical Programs) and Stephanie Steele (Director of Payor Relations and Policy) give a presentation on making sure you, as an individual with PI, have the tools you need to get the care you deserve.The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, …
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Returning to In-Person EventsIDF's Tammy Black and Alissa Creamer discuss the organization's return to in-person events, as well as the safety protocols and virtual offerings available at the upcoming Walk for PI and PI Conference events.IDF Clinician Finder: https://primaryimmune.org/clinician-finderWalk for PI: https://www.walkforpi.org/Primary I…
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2022 is already more than half over, so we at IDF are reflecting on the goals we’ve set, and the progress we’ve made toward meeting them. On this episode, Jamie Sexton, director of state policy, and Becca Russ, grassroots advocacy specialist, discuss the organization’s advocacy work at a state level so far this year, and the progress we’ve made tow…
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M. Elizabeth M. Younger, CRNP, PhD, Assistant Professor of Pediatrics at Johns Hopkins University School of Medicine joined us at a recent IDF forum to discuss immunoglobulin replacement therapy and the various ways it can be tweaked to fit each patient's unique needs.The information, terminology, and opinions presented in this forum do not necessa…
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Dr. Arturo Casadevall is a Bloomberg Distinguished Professor of Molecular Microbiology & Immunology and Infectious Diseases, as well as a recent inductee to the National Academy of Sciences. Today, he joins us to discuss his research into convalescent plasma in the fight against COVID-19.저자 Immune Deficiency Foundation
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When a child is diagnosed with Severe Combined Immunodeficiency or SCID, not only is the child affected but the family is as well. In this episode, we will be talking with certified child life specialist, Samantha Childs, MS, CCLS about the importance of supporting siblings of children with chronic illness, specifically SCID. This session was origi…
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Being diagnosed with a rare disease like PI can be intimidating, as well as confusing. Hear from panelists, Nicole Rochester, MD, Mary Hintermeyer, APNP, and Brian Rath, JD as they review some important questions and information that you should use when discussing your diagnosis concerns with your healthcare provider. This session was originally pr…
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For those living with rare diseases, such as PI, it is important to have a strong voice in state government and advise policymakers on critical issues related to access, coverage, and the diseases themselves. Many state policymakers are unaware of the challenges the rare disease community faces. To help bridge these gaps in knowledge, Rare Disease …
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According to the Bureau of Labor Statistics, employment in science, technology, engineering, math fields (otherwise known as STEM), is projected to grow twice as fast in the next decade as for all occupations. Even so, a recent Pew Center study reported that only 7% of recent graduates in STEM fields were Black students. In today's episode, we will…
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Chronic Granulomatous Disease or CGD, one of the rare forms of primary immunodeficiency, causes an increased susceptibility to infections caused by certain bacteria and fungi. In today’s diagnosis-specific episode, we will be exploring treatment options, particularly Bone Marrow Transplant, or BMT for CGD with Felicia Morton and Dr. Vinod Prasad.…
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In this SCID Compass episode, we will be talking with two research specialists, Virdette L. Brumm, Ph.D., and Sharon A. Kidd, MPH, Ph.D., from the Primary Immune Deficiency Treatment Consortium or PIDTC to discuss a collaborative study on assessing neurodevelopmental outcomes in SCID patients. This session was originally presented as a SCID Compass…
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In this episode, we will be addressing payer challenges as well as discussing the ability to ensure access to genetic testing with Manish Butte, MD, Ph.D., and Abraham Yunis, MBA. This session was originally presented during IDF’s Rare of the Rare Summit in October.저자 Immune Deficiency Foundation
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Are you interested in learning more about clinical research trials that are available for you? In today’s episode, we will be discussing important information about clinical trials with Jason Bradt, MD, Ali Smyth, Ph.D., and Elizabeth(Buffy)Garabedian, RN, MSLS. This session was originally presented during IDF’s Rare of the Rare Summit in October.…
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Undergoing treatment for Severe Combined Immunodeficiency or SCID involves months in the hospital as well as months of isolation. Today, we will be speaking with Rachel Homer about how her family navigated isolation, especially during the pandemic.저자 Immune Deficiency Foundation
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As the Coronavirus progresses, the COVID-19 vaccine continues to be our best form of protection against the deadly virus, especially for those living with primary immunodeficiency or PI. The CDC recommends all individuals who are 12 years old and older receive a COVID-19 vaccine. In today’s episode, we will be discussing the importance of the COVID…
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One of IDF’s many great initiatives, IDF Walk for Primary Immunodeficiency, unites all members of the PI community to help create better lives for those living with these rare, chronic disorders. You can register for an IDF Walk for PI in your area as a participant or as part of a team. Many teams are created for the walks and are led by enthusiast…
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As our nation grapples with issues of bias and racism, we have an obligation to address racial disparities in the PI community, in medicine, and in society at large. Listen as our panelists, Nicole Rochester, MD, FAAP, Michele Andrasik, PhD, and Vivian Hernandez-Trujillo, MD discuss the importance of achieving health equity by increasing opportunit…
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Plasma-derived therapies are used daily by thousands of individuals around the world with chronic, rare conditions. Because of its diverse and lifesaving uses, knowledge of plasma-derived therapies and plasma donation is critical. Here with us to discuss the ethics of plasma is a panel of influential leaders, Mark Skinner, JD, Johan Prevot, Val Bia…
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While we usually dive into topics that are medical in nature, we wanted to take the opportunity today to talk with a subject matter expert of a different type - IDF Interim CEO, Kathryn Stephens. Kathryn Stephens joined the IDF team in mid-April as Interim CEO of IDF. She comes to us with more than 20 years of experience in nonprofit management. Li…
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As part of the blood screening during a newborn screening at birth, doctors measure the T cell receptor excision circles or TRECs to test if they are within a normal or abnormal range. Abnormal TREC results could mean that a baby has Severe Combined Immunodeficiency or SCID, or it could be a different condition associated with the immune system. It…
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Wiskott-Aldrich Syndrome or WAS is a unique form of primary immunodeficiency. WAS primarily affects males because it’s an X-linked recessive condition and is characterized by abnormal bleeding and eczema of the skin. To discuss WAS further, we will be talking with our guest, Sumathi Iyengar, the Executive Director of the Wiskott-Aldrich Foundation.…
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Many people living with primary immunodeficiency rely on injectable medical therapies such as immunoglobulin replacement therapy, or Ig, to maintain healthy lives. Receiving these infusions can be frightening to those who are afraid of needles, and can challenge anyone who has to receive multiple needle pricks. Beyond needle pain, people with PI ma…
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Receiving advice or support after diagnosis of a genetic condition can be overwhelming for families. One resource for information about the condition and for counseling related to living with the uncertainties and the concern about your child is genetic counseling. Genetic counselors work alongside your medical team to advise individuals and famili…
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As we continue to battle COVID-19 into 2021, everything around us seems to be changing - attending school is now virtual, seeing our friends is done socially distant while wearing a mask, vacation plans are being canceled or rescheduled, and so much more. For teens living with PI, fear, anxiety, and loneliness may be overwhelming, as many try to st…
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Severe Combined Immunodeficiency, or SCID, is a life-threatening primary immunodeficiency, typically diagnosed at birth. Early detection is critical for these children, as is the prevention of infection and early treatment. With early treatment, most children with SCID should be able to develop their own working immune system. While most families t…
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