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b"ONCE UPON A GENE - EPISODE 124\\nAdapting and Collaborating to Help Bring a Cure to GSD1B with Sophie's Hope Foundation Founder and Dadvocate Jamas LaFreniere\\n\\nJamas LaFreniere is the rad dad to Sophie, who has an ultra-rare glycogen storage disease called GSD1B. He\\u2019s also the founder of Sophie\\u2019s Hope Foundation and CureGSD1b.\\xa0\\n\\n\\nEPISODE HIGHLIGHTS\\n\\nTell us about Sophie's diagnosis and the foundation you started.\\nSophie just turned 4 years old and was diagnosed with GSD1B just before she turned 2 years old. We started Sophie's Hope Foundation a couple months after diagnosis with the intention of leveraging our network to raise money. CureGSD1b is a patient advocacy organization which was started to bring together doctors, patients, researchers and collaborators.\\xa0\\n\\nHow do you balance fatherhood, marriage and business?\\xa0\\xa0\\nIt's hard and there's no way around that. My wife Margot is an incredible teammate and best advocate for Sophie. Margot takes a lot of pressure off me and I try to do the same for her and the balance works despite it being a strain.\\n\\nWhat has been a difficult experience on your journey to raise money and awareness for GSD1B?\\nMaking the pivot to start CureGSD1b came with a realization that I was responsible for driving a research plan, building a GSD network, collecting data and making impactful decisions. I had to acknowledge my strengths and weaknesses and remind myself that I'm doing my best to make progress.\\xa0\\n\\nWhat is your fundraising strategy?\\nI don't enjoy fundraising, but the reason we're doing it is to cure my daughter and thousands of other kids. We do an annual golf tournament, which stabilizes us financially for the year. Having a lynchpin event is important because people will get burned out if you continually ask for money. The golf tournament will likely always be our flagship event and we can add other fundraising events throughout the year.\\n\\n\\nLINKS & RESOURCES MENTIONED\\nOnce Upon a Gene TV\\nhttps://www.thedisordercollection.com/\\nCourageous Parents Network\\nhttps://courageousparentsnetwork.org/\\nSophie\\u2019s Hope Foundation\\nhttps://sophieshopefoundation.org/\\nCureGSD1b\\nhttps://curegsd1b.org/\\nSupport Margot in the 2022 Boston Marathon\\nhttps://www.givengain.com/cc/sophieshope2022bostonmarathon/\\nONCE UPON A GENE - Episode 094 - The 12 Commandments to guide you when you're starting a rare disease patient advocacy group with Nasha Fitter and Mike Graglia\\nhttps://effieparks.com/podcast/episode-094-mike-and-nasha\\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/"