Transcript: https://primaryimmune.org/sites/default/files/TRANSCRIPT%20--%20Undiagnosed%20Episode%202.pdf A 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 weeks or months of agony for some. This reality is made even harsher for someone who finds profound joy in the simplicity of growing flowers from tille...
May 01, 2023•21 min
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.pdf Dr. Clardy's paper on neurological symptoms in CVID: https://nn.neurology.org/content/10/3/e200088 The information, terminology, and opinions presented in th...
Apr 19, 2023•1 hr
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 transcript of this episode, click here: https://primaryimmune.org/sites/default/files/Bold%20Conversations%20episode%202%20transcript.pdf Study on co...
Apr 04, 2023•40 min
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 journey to diagnosis. Imagine an energetic young girl. As the oldest of four children under the age of five, she’s the caretaker of her siblings. She’s...
Mar 06, 2023•27 min
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.
Feb 06, 2023•13 min
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/askidf The information, terminology, and opinions presented in this forum do not necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors.
Jan 18, 2023•18 min
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-Ry6Y Scholarly article: Clinical Presentations, Diagnostic Considerations, and Therapeutic Options for Gastrointestinal Manifestations of Common Variable Immune Deficiency -- https://journals.lww.com/ajg/Abstract...
Dec 15, 2022•45 min
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-Connection%20Physical%20Mental%20Health-Seymour.pdf Ask IDF: http://www.primaryimmune.org/askidf Donate or volunteer: https://primaryimmune.org/waystogi...
Nov 30, 2022•55 min
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.
Oct 31, 2022•25 min
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, its Board of Trustees, sponsors, or donors.
Sep 28, 2022•1 hr 13 min
Returning to In-Person Events IDF'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-finder Walk for PI: https://www.walkforpi.org/ Primary Immunodeficiency Conference: https://web.cvent.com/event/1593c0cc-9b7b-4ffc-9f24-d4964dda8206/summary
Aug 23, 2022•17 min
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 toward improving the lives of those in the PI community. Faces of IDF: https://primaryimmune.org/faces-idf I Am Immunocompromised Card: https://primaryim...
Jul 25, 2022•24 min
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 necessarily reflect the views of IDF, its Board of Trustees, sponsors, or donors. To view the slideshow used in the presentation, click here: https://primar...
Jul 01, 2022•1 hr 16 min
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.
May 26, 2022•27 min
Tammy Black sits down with IDF's new President and CEO, Jorey Berry, to discuss surprises and goals after her first few months with the organization.
May 13, 2022•31 min
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 originally presented as a SCID Compass Lunch and Learn.
Feb 25, 2022•40 min
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 presented as an IDF Forum.
Feb 11, 2022•44 min
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 Advisory Councils or RDACs are created. RDACs serve as an advising body and liaison between the rare disease community and state governments. With us ...
Jan 31, 2022•33 min
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 be talking with two experts, Dr. Nicole Rochester and Alexis Mobley, to help us gain a better understanding of how to address these concerns and why ...
Dec 29, 2021•45 min
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.
Dec 16, 2021•34 min
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 Lunch and Learn.
Nov 17, 2021•40 min
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.
Oct 28, 2021•34 min
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.
Oct 15, 2021•38 min
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.
Sep 30, 2021•25 min
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-19 vaccine, specifically for teens, with a panel of Teen Leaders.
Sep 17, 2021•35 min
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 enthusiastic Team Captains! With us to discuss being a team captain is Rachel Novak, the team captain of Team Cats Peeps.
Aug 31, 2021•28 min
For those living with primary immunodeficiency, awareness about these rare, chronic disorders is crucial. Listen as influential leaders within the PI community, Harper Spero, Carol Ann Demaret, Autry Beamon, and John Robison, discuss the misconceptions, public portrayals, and general understanding of PI.
Jul 23, 2021•43 min
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 opportunities for everyone to live their healthiest life possible, no matter who they are.
Jul 16, 2021•1 hr 2 min
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 Bias, and Peter Jaworski, Ph.D. This episode was originally presented during IDF’s 2021 PI Conference in June.
Jul 09, 2021•1 hr 13 min
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. Listen as we discuss her work as well as examine her role as Interim CEO.
Jun 11, 2021•15 min
