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b"As a young girl, Madison McLaughlin made her way to LA to pursue acting and she's held roles in Chicago PD, Supernatural and Arrow. But she's also a rare disease super hero and celebrity in our community- the rare disease community. Madison's three younger sisters have been diagnosed with hypomyelination with brainstem and spinal cord involvement and leg spasticity (HBSL).\\xa0\\n\\nEPISODE HIGHLIGHTS\\nCan you share a bit about your sisters?\\nI'm the oldest of four girls. Marissa is 18, Mallory is 16 and Mahrynn is 14. Marissa and Mahrynn have an ultra-rare disease that affects less than 25 people in the world called HBSL. Mallory is also a carrier of this disease. Mallory has never had any symptoms and is typically developing. Marissa and Mahrynn use mobility assistance such as walkers and wheelchairs, but they're not affected cognitively.\\nWhen considering yourself a caregiver, how does it affect you in realizing that as your role?\\nWhat have people done for you to make you feel special?\\nWhen did you start therapy individually and as a family?\\nWhat boundaries have you set for yourself?\\nAre you a part of groups with siblings like you and is there a common thread among siblings?\\n\\nLINKS AND RESOURCES MENTIONED\\nOnce Upon a Gene Channel with The Disorder Channel\\nhttps://www.thedisordercollection.com/\\nOnce Upon a Gene with The Disorder Channel on YouTube\\nhttps://www.youtube.com/watch?v=68ZUSyqdeZo&t=4s\\nNikki McIntosh, Rare Mamas\\nhttps://raremamas.com/\\nMacPac Foundation\\nhttps://www.macpacfoundation.org/\\n\\nTUNE INTO THE ONCE UPON A GENE PODCAST\\nSpotify\\nhttps://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7\\n Apple Podcasts\\n https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347\\nStitcher\\nhttps://www.stitcher.com/podcast/once-upon-a-gene\\nOvercast\\n https://overcast.fm/itunes1485249347/once-upon-a-gene\\n\\nCONNECT WITH EFFIE PARKS\\nWebsite\\nhttps://effieparks.com/\\nTwitter\\nhttps://twitter.com/OnceUponAGene\\nInstagram\\n https://www.instagram.com/onceuponagene.podcast/?hl=en\\nBuilt Ford Tough Facebook Group\\nhttps://www.facebook.com/groups/1877643259173346/"