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b"ONCE UPON A GENE - EPISODE 182\\nDoctor and Rare Disease Dad Is On A Mission to Accelerate Research and Drug Development Efforts for His Child's KCNT1 Epilepsy with Dadvocate Dr. Justin West\\n\\nDadvocate Dr. Justin West is the father to Andrew, who has a devastating disease called KCNT1, a rare infant-onset seizure disorder. Justin serves as President and Co-Founder of the KCNT1 Epilepsy Foundation.\\n\\nEPISODE HIGHLIGHTS\\n\\nHow has your work been impacted since Andrew's diagnosis?\\nSurgeons tend to be problem solvers and we like definitive, quick solutions we can act fast on. I realized I couldn't carry the same emotional weight for my patients that I did before my son's diagnosis. It was hard to give my energy to patients and have any left when I got home. I went through some career changes to preserve more energy for my family.\\xa0\\n\\nWhat is the goal for Andrew's disease?\\nAndrew is almost 6 years old and I can't explain the pain of never hearing his voice or seeing him walk. I would consider it a failure if I didn't see him walk, talk or both at some point. I'm driven towards this goal everyday for him, me and my wife and other children too. Meanwhile, I'll be doing everything I can to help Andrew have the best life.\\n\\nWhat is the value in families contributing and sharing their experience through surveys?\\nWe have to communicate every story, which varies from family to family. Everyone's perspective and experience is different, and this is a way for families to directly advocate for the patient and themselves. Sharing through surveys gives organizations key information to identify a group of patients and whether or not they have enough people to participate in a trial. Drug companies have to be interested and know that enough patients will try it. If not enough of a patient community is engaged in that process, no treatment advances are made. Spending the time to contribute data has the potential to help everyone in the future and it's the biggest gift any parent can give their sick children, healthy children, themselves and their community.\\xa0\\n\\n\\nLINKS & RESOURCES MENTIONED\\nKCNT1 Epilepsy Foundation\\nhttps://kcnt1epilepsy.org/\\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/\\n\\nInterested in advertising on Once Upon a Gene? Email advertising@bloodstreammedia.com for more information!"