The Hyper IgM Podcast

Hosted by Ezra Fineman

Business Health Fitness

Website RSS feed

Episodes

Latest episode

Oct 2026

Language

About the show

In the world of rare diseases, amplifying patient voices is crucial for empowering others to make informed treatment decisions and for providing insights to healthcare professionals and researchers about the patient experience and its impact on quality of life. With conditions like Hyper IgM Syndrome, a rare immune deficiency affecting one in a million individuals, the majority of those affected are children. Yet, narratives in the pediatric rare disease realm often stem from the perspectives of parents, medical professionals, or adult survivors. Breaking this mold, the Hyper IgM Foundation has launched an innovative podcast, where children affected by X-Linked Hyper IgM Syndrome share their own stories. Led by Ezra Fineman, a 15-year-old high school freshman and two-time recipient of a hematopoietic stem cell transplant due to Hyper IgM Syndrome, this podcast offers a fresh format. Here, young patients interview one another, providing intimate and informative conversations about their experiences with Hyper IgM Syndrome and life with a rare disease. This approach offers a unique glimpse into the patient journey from the perspective of pediatric patients themselves.

Listen to episodes

9 recent

October 29, 202613 min

Hyper IgM Podcast - King is Looking for his Lifesaving Stem Cell Donor (With Special Guest Ace)

Swab Your Cheek For King with Gift of Life!: https://www.giftoflife.org/register?SPCODEPrm=kingandace In Episode 9 of the Hyper IgM Podcast, Ezra talks with King, a 13-year-old boy currently living with Hyper IgM and searching for his life-saving stem cell donor. King shares what it's like living with Hyper IgM, hosting stem cell donor drives, and watching his little brother Ace, who is 6 and also has Hyper IgM, go through a transplant. Enjoy the episode! Learn more about Ace and King here: https://www.giftoflife.org/dc/kingandace

August 11, 202632 min

Hyper IgM Podcast - E8 - Rebekah shares a Parent's Perspective on Transplant

April 12, 202626 min

Hyper IgM Podcast - Patient Voices - E7 - Marcus Gives an International Transplant Perspective!

In episode 7 of the Hyper IgM podcast, Marcus, a 23-year-old from Sweden, joins us to share his unique journey with Hyper IgM. Marcus walks us through the effects Hyper IgM had on his family and friends, his relationship with his transplant doctor, an amusing sibling rivalry, and much more! The Hyper IgM Foundation: https://hyperigm.org/

January 5, 202633 min

Hyper IgM Podcast - Patient Voices - E6 - Chris Returns for an Update on his Gene Editing Journey!

In episode 6 of the Hyper IgM Podcast, Chris returns to share an update on his remarkable journey as the first patient to undergo gene editing therapy for Hyper IgM Syndrome. He discusses hospital life, the emotional and physical challenges faced during his stay, and much more! Episode 4: https://www.youtube.com/watch?v=lx19vdr07b4&t=1188s The Hyper IgM Foundation: https://hyperigm.org/

August 28, 202534 min

Hyper IgM Podcast - E5 - Featuring Dr. Prockop, Renowned Pediatric Stem Cell Transplant Physician!

In episode 5 of the Hyper IgM Podcast, we change the focus from patients to doctors with this in depth interview of Dr. Susan Prockop, Program Director, Clinical and Translational Research; Outpatient Clinic Director, Hematopoietic Stem Cell Transplant Program; and Attending Physician, at Dana-Farber/Boston Children's Cancer and Blood Disorders Center. Ezra dives into what makes Hyper IgM Syndrome unique and often challenging to treat, promising new treatment options, and more! A big thank you to Blue Jay Advisory for sponsoring this episode 5! Enjoy the episode! The Hyper IgM Foundation: https://hyperigm.org/ Blue Jay Advisory: https://bluejayadvisory.co.uk/ Visit our YouTube for video versions of all our episodes!: https://www.youtube.com/@TheHyperIgMPodcast

March 10, 202529 min

Hyper IgM Podcast - Patient Voices - E4 - featuring Chris, the FIRST HIgM gene editing candidate!

In Episode 4 of our Paitent Voices Hyper IgM Podcast, Chris shares revolutionary info about a new experimental treament plan for Hyper IgM Syndrome, gene editing, and much more! Enjoy the episode!

August 28, 202424 min

Hyper IgM Podcast - Patient Voices - E3 - Ezra Talks to Josh

In Episode 3 of our Paitent Voices Hyper IgM Podcast, Josh shares his experience going through transplant and his significant post transplant complications involving a rare form of kidney cancer called Renal Cell Carcinoma (RCC). Josh, 16, lives in the U.K. and enjoys programming and gaming. All of our previous episodes are below and on our Hyper IgM Podcast YouTube Channel. Please don’t forget to subscribe and share. Enjoy!

May 24, 202425 min

Epiosde 2 - Ezra Talks to Simon - Hyper IgM Podcast - Patient Voices

In the second episode, Ezra sits down with 12 year old Simon from Utah who is currently living with Hyper IgM syndrom. Simon delves into all the challenges that comes with living with Hyper IgM.

April 11, 202422 min

Episode 1 - Ezra Talks to Idan - Hyper IgM Podcast - Patient Voices

In the debut episode, Ezra sits down with 11-year-old Idan Zablocki from New York. Idan, diagnosed with X-linked Hyper IgM Syndrome, also known as CD40 Ligand Deficiency, at just 8 months old, faced a life-threatening battle with a rare pneumonia called Pneumocystis jiroveci pneumonia. This fungal infection of the lungs specifically targets individuals with compromised immune systems. Idan underwent two hematopoietic stem cell transplants before the age of 4 and is currently considered cured of his immunodeficiency and Hyper IgM. Residing in NYC with his parents and younger sister, Idan enjoys school, reading, chess, and exploring the outdoors. if you enjoy the podcast, please subscribe to our channel and feel free to share with your networks! Hyper IgM Foundation www.hyperigm.org