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b"Time is Brain: SYNGAP Research Fund with Mike Graglia\\nBo Bigelow and Daniel DeFabio have started a TV channel called The Disorder Channel where you can see all their rare stories in one place. You can access the channel with a Roku or Amazon Fire TV Stick. I had the honor and opportunity to narrate one of these films, The Foundations of Rare: The SYNGAP Research Fund and that\\u2019s how I connected with my next guest.\\nMike Graglia is a dad on a mission. His son is one of around 600 patients born with SYNGAP1, a rare neurological disease. Like many other rare disorders, like CTNNB1, SYNGAP1 affects the production of a protein. It's considered a spectrum disorder because all patients aren't affected the same way or to the same severity. After attending a Global Genes conference, Mike and his wife Ashley were inspired to turn hope into action and they founded the SYNGAP Research Fund. Their sole mission is funding research science for SYNGAP1.\\xa0\\n\\nEPISODE HIGHLIGHTS\\nCan you tell us about Tony's rare disease and how it affects him?\\nWhen did you get Tony's diagnosis?\\nWhen did you and Ashley decide to take action and do something when no one else was?\\nCan you tell me about your mission of collaboration, transparency and urgency?\\nWhat would you tell a parent who is motivated and inspired to do something like what you're doing?\\n\\nLINKS AND RESOURCES MENTIONED\\nSYNGAP Research Fund Website\\nhttps://syngapresearchfund.org/\\nSYNGAP Research Fund Blog\\nhttps://syngapresearchfund.org/syngapblog\\n SRF - SynGAP Research Fund, Inc. YouTube\\n https://www.youtube.com/channel/UCtnPWPpqouMA_1UGOyu4W6A/\\nGlobal Genes\\nhttps://globalgenes.org/\\nContact Mike Graglia\\xa0\\nmike@syngapresearchfund.org\\nThe Disorder Channel\\nhttps://www.thedisordercollection.com/\\n\\nTUNE INTO THE ONCE UPON A GENE PODCAST\\nSpotify\\n Apple Podcasts\\nStitcher\\nOvercast\\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/"