23 min listen
An Innovative Approach to Funding Rare Disease Research - Heather and Ryan Fullmer, Co-founders of the EB Research Partnership
FromRaise the Line
An Innovative Approach to Funding Rare Disease Research - Heather and Ryan Fullmer, Co-founders of the EB Research Partnership
FromRaise the Line
ratings:
Length:
43 minutes
Released:
Oct 26, 2022
Format:
Podcast episode
Description
Heather Fullmer will never forget seeing her nursing license for the first time and realizing the date of issuance was the same as her son Michael’s birthday. She had spent the week since delivering him in the NICU as Michael’s struggle with the rare, life-limiting skin disorder Epidermolysis Bullosa began. “It was a surreal moment. I became a nurse professionally, and in my personal life on the exact same day,” she tells host Shiv Gaglani. EB is a pernicious disease which causes skin to tear at the slightest touch, with resulting wounds that don't heal. “If I had to sum up Michael's day,” says her husband, Ryan Fullmer, “it's probably fear and pain. We still haven't been desensitized to his screams, or the disappointment on his face from not being able to enjoy the day-to-day things that he sees his friends do.” In this inspiring episode of Raise the Line, you’ll learn how the Fullmers rose above their all-consuming struggles to care for Michael to forge a new approach to rare disease research with the support of Pearl Jam singer Eddie Vedder and his wife, Jill. The resulting EB Research Partnership raises millions of dollars a year to fuel promising efforts to find a cure for EB and, ultimately, other rare diseases. Tune in to learn how the “venture philanthropy” model they use differs from typical investing, and hear about important fundraising events for EB including Venture Into Cures hosted by Spiderman actor Tom Holland. And be sure to stay tuned to hear their advice to medical providers on the importance of building rapport with patient families, and taking an interdisciplinary approach to treating rare disorders. Mentioned in this episode:https://www.ebresearch.org/founders.htmlhttps://www.ebresearch.org/our-mission.htmlhttps://www.ebresearch.org/venture-into-cures.htmlMikey's World video
Released:
Oct 26, 2022
Format:
Podcast episode
Titles in the series (100)
Dr. Roger Seheult, Co-Founder of Medcram: Why are young patients with COVID 19 having strokes? Why are ventilators not as effective as expected? Why do some patients have the symptoms of altitude sickness? One explanation for these mysteries is the disease keeps adapting and changing. But the other is that our understanding of it is catching up to what might be the truth: COVID 19 is not primarily a lung disease but rather a disease of the cells that line the inside of blood vessels and lymphatic vessels. Pulmonologist Roger Seheult, one of the drivers behind the popular Medcram video series, talks about the evolving understanding of COVID 19 and his approach to explaining complex medical subjects to a general audience. by Raise the Line