15: From Porphyria To Cancer: How Trials Helped The Journey

From Porphyria To Cancer: How Trials Helped The Journey - On this episode of the Rarely Discussed Podcast, Andrew McManamon has the opportunity to sit down with Mike Boone, someone who truly defines resilience, someone we’d call a medical hero and I know he’d be too humble to admit, but the porphyria community is so small that even what you’d think are small commitments, mean the world to us as patients. Mike Boone was diagnosed with Acute Intermittent Porphyria back in the early 2000’s, but It wasn’t new to his family—his great uncle, grandmother, and mother were all diagnosed before him—but that didn’t make it any less overwhelming. After experiencing repeated attacks and struggling to figure out how to support his family, Mike found the American Porphyria Foundation, which connected him to Panhematin, a treatment that finally gave him some relief. From there, he didn’t just focus on his own recovery—he started giving back, joining multiple research studies to help advance treatment for others. He even flew to Texas for a double-blind clinical trial, not knowing if he was getting real medication or a placebo. Eventually, he got access to Givlaari, a newer treatment that helped reduce his attacks and allowed him to get his life back on track. Recently, Mike was hit with a new challenge—a cancer diagnosis—and even now, he's facing it with the same strength and determination he’s shown all along. I’m so honored to have him here today to share his story.Michael Boone's Porphyria Story ⬇️→APF Patient Story: https://porphyriafoundation.org/for-patients/member-stories/acute-intermittent-porphyria/michael-boone/Rarely Discussed Podcast 🎙️→Rarely Discussed: https://beacons.ai/rarelydiscussedFOLLOW Rarely Discussed:→YouTube: https://shorturl.at/mtuwO→Instagram: https://shorturl.at/xGHPT→Tik Tok: https://shorturl.at/qEGQZMEET Nicole Castellano:→Nicole's Story: https://t.ly/IsGK7→Facebook: https://shorturl.at/krQZ8→Instagram: https://www.instagram.com/nicowildkat/?hl=enMEET Andrew McManamon:→Andrew's Story: https://t.ly/01JLz→Facebook: https://t.ly/kHuvX→Instagram: https://t.ly/Htuwg→Tik Tok: https://t.ly/eK1bPAmerican Porphyria Foundation:→Website: https://porphyriafoundation.org/→Instagram: https://rb.gy/osvb08→Facebook Group: https://rb.gy/217o99→YouTube Channel: https://rb.gy/9s0kcm#michaelboone #porphyria #acuteintermittentporphyria__________This podcast is supported by Recordati Rare Diseases. Recordati has no control or influence over the content mentioned in this podcast.