An Innovative Approach to Funding Rare Disease Research - Heather and Ryan Fullmer, Co-founders of the EB Research Partnership

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 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