Overcoming a One-in-A-Million Disease: Akiva Zablocki, President of the Hyper IgM Foundation

When Akiva Zablocki found out his infant son Idan had a one-in-a-million immune disorder, he and his wife Amanda were terribly worried, as all parents would be. But unlike most parents of children with rare diseases, Akiva could draw on the expertise in navigating the healthcare system he gathered when successfully overcoming his own rare and scary ordeal with a brain stem tumor. Thanks to that know-how, his wife’s background in healthcare law, some amazing clinicians, the couple’s tenacity, and Idan’s spirit, he is now a healthy ten-year-old enjoying summer camp. On this episode of Raise the Line, Akiva shares the remarkable details of his family’s journey with host Shiv Gaglani, and tells the story of how the Hyper IgM Foundation, which the Zablockis launched, is helping patients all over the world. Be sure to stay tuned for some heartfelt advice for current and future providers as they encounter patients and families with rare diseases. 

Mentioned in this episode: https://hyperigm.org/

If you like this podcast, please share it on your social channels. You can also subscribe to the series and check out all of our episodes at www.osmosis.org/podcast