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b'ONCE UPON A GENE - EPISODE 151\\nRare Friends Forever - Hanging Out and Showing Some Love to Brene Brown with Katie Lloyd and Adam Johnson\\n\\nAdam "Dadvocate" Johnson and Katie Lloyd are on the podcast, joining me for a lighthearted chat about Bren\\xe9 Brown, a research professor who has spent the past two decades studying courage, vulnerability, shame, and empathy.\\xa0\\n\\nEPISODE HIGHLIGHTS\\n\\nAdam, what are some of your favorite quotes and why?\\nOne that stands out in terms of transitioning into the rare disease space is from Daring Greatly and says, "What we know matters, but who we are matters more." This was impactful to me because when rare disease happened and I was losing my career, transitioning into survival mode, I had to find myself again and remember that who I was mattered more.\\xa0\\n\\nKatie, can you share a quote that has impacted you?\\nIt\'s very scary to be vulnerable and it reminds me of the quote, "Tell the story of who you are with your whole heart." Last time I was on the podcast, I shared vulnerable thoughts and feelings and later worried about who would hear them. This quote reminds me that it\'s important to open up and share and that it helps others feel they\'re not alone. Brene talks a lot about shame and says, "Shame is the fear of disconnection." When we are vulnerable, especially talking about rare disease, we connect and we feel more open and less ashamed.\\n\\nLINKS & RESOURCES MENTIONED\\nEpisode 125 - A Very Rare and Very Real Adventure with DeSanto-Shinawi Syndrome Mom and Author of a Very Rare Adventure Katie Lloyd\\nhttps://effieparks.com/podcast/episode-125-katie-lloyd\\nEpisode 052 - Adam Johnson - Rare Disease Dad on Mitochondrial Myopathy and Owning Your Story\\nhttps://effieparks.com/podcast/episode-052-adam-johnson-mitochondrial-myopathy\\nBren\\xe9 Brown, TEDxHouston: The power of vulnerability\\nhttps://www.ted.com/talks/brene_brown_the_power_of_vulnerability\\nDare to Lead\\nhttps://brenebrown.com/book/dare-to-lead/\\nAtlas of the Heart\\nhttps://brenebrown.com/book/atlas-of-the-heart/\\nBren\\xe9 Brown: Atlas Of The Heart on HBO Max\\nhttps://www.hbomax.com/series/urn:hbo:series:GYivWaAXEZMLDwwEAAACz\\nDaring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead\\nhttps://www.amazon.com/Daring-Greatly-Courage-Vulnerable-Transforms/dp/1592408419\\nParents As Rare Podcast\\nhttps://rarediseasedad.com/parents-as-rare-my-pod\\nA Very Rare Adventure Blog\\nhttps://averyrareadventure.com/\\nThe Imaginary Dad Podcast on YouTube\\nhttps://www.youtube.com/channel/UCxSX6fMdpfcruG_Tt3JJ0TQ/featured\\n\\nTUNE INTO THE ONCE UPON A GENE PODCAST\\nSpotify\\nhttps://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7\\nApple Podcasts\\nhttps://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347\\nStitcher\\nhttps://www.stitcher.com/podcast/once-upon-a-gene\\nOvercast\\nhttps://overcast.fm/itunes1485249347/once-upon-a-gene\\n\\nCONNECT WITH EFFIE PARKS\\nWebsite\\nhttps://effieparks.com/\\nTwitter\\nhttps://twitter.com/OnceUponAGene\\nInstagram\\nhttps://www.instagram.com/onceuponagene.podcast/?hl=en\\nBuilt Ford Tough Facebook Group\\nhttps://www.facebook.com/groups/1877643259173346/\\nOnce Upon a Gene TV\\nhttps://www.thedisordercollection.com/'