Immune Deficiency Foundation

Latest Episodes:

Teens & Vaccines - Part Of The Teen Series Sep 17, 2021

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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-19 vaccine, specifically for teens, with a panel of Teen Leaders.

Successful Fundraising & Team Building: Learning From An IDF Walk For PI Team Captain Aug 31, 2021

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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 enthusiastic Team Captains! With us to discuss being a team captain is Rachel Novak, the team captain of Team Cats Peeps.

The Public Face of PI Jul 23, 2021

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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.

Health Equity Jul 16, 2021

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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 opportunities for everyone to live their healthiest life possible, no matter who they are.

Plasma Ethics Jul 09, 2021

Show notes

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.

Q&A with Kathryn Stephens Jun 11, 2021

Show notes

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.

Low T Cell Counts In Babies - Part of the SCID Compass Series May 26, 2021

Show notes

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 is essential to learn about the medical steps parents should take if their child has an abnormal result and is diagnosed with low T cells. We will be discussing these medical steps further today with Dr. John Routes.

Wiskott-Aldrich Syndrome (WAS) - A Diagnosis-Specific Episode Apr 30, 2021

Show notes

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. Dr. Iyengar is a pediatrician-turned-advocate for WAS after her son was diagnosed at a young age. She is a partner and longtime friend of IDF.

Pain Management: From Infusions To Everyday Life Mar 31, 2021

Show notes

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 may also be living with chronic pain, causing issues such as arthritis, inflammation, or muscle aches. Pain management is crucial and necessary to help those suffering from acute or chronic pain. We discuss pain management further with Dr. Amy Baxter, the CEO and Founder of Pain Care Labs and the inventor of the physiological pain blocker product, Buzzy. Buzzy and other Pain Care Labs products can be found on www.paincarelabs.com or www.amazon.com.

Genetic Counseling - Part of the SCID Compass Series Feb 18, 2021

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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 families affected by genetic disorders like Severe Combined Immunodeficiency, or SCID. Listen as Barbara Biesecker, PhD shares her expertise in genetic counseling.

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