Cure VCP With Rare Disease Trailblazer - Nathan Peck

Nathan Peck is a dadvocate living with an adult onset disease. He's also the Founder and CEO of Cure VCP Disease. Through Cure VCP Disease, Nathan and his wife Allison are committed to bringing together patients, caregivers, researchers, pharmaceutical companies and other non-profits to identify treatments and find a cure for Valosin-Containing Protein (VCP) Disease.  EPISODE HIGHLIGHTS Tell us about your family and the rare disease that impacts you. I'm a father of three boys and I'm married to my wife Allison. My mom came from a family of six siblings where here and three others had VCP Disease. About the time I left for college, my mom was having trouble reaching for things and was getting physically weaker. By the time my wife and I married, right after I graduated college, my mom could barely walk. The disease is much like ALS, but over a much longer time.  When did you discover the genetic mutation that was affecting your family? My dad was going through my mom's medical records and we found a letter where she was diagnosed with a valosin containing protein mutation. I was later diagnosed and became interested in it and started learning more.  Tell us about the organization you started. My oldest uncle created a website about what he was learning about himself, which was a resource for people to go to. We knew there were other families affected and I started thinking about data disappearing and succession planning. As an engineer, I've always been about building modular, sustainable processes and that was behind building Cure VCP Disease. There wasn't an organization representing the patients, there wasn't a patient registry and doctor's data wasn't aggregated. I'm not worried about or focused on saving myself- I'm doing the work for the patients for the future and my kids.  Have you connected with other parents living with the rare disease and has that helped you? In the adult onset community, things are different, but we have a lot of common challenges. Everyone is willing to come together and share and you're part of the family. There's no prescription for this and everybody has to create their own path, but listening to others is so important. Putting yourself out there and meeting people can help you and may lead you to someone else who can help.  What is your most valuable resource as a dad? The rare disease community. In getting involved with Global Genes, NORD and EveryLife Foundation, I've met so many awesome people and rare disease advocates which keeps me going.  LINKS AND RESOURCES MENTIONED Rare Disease Day https://www.rarediseaseday.org/ ONCE UPON A GENE - EPISODE 024 - Choosing Hope with Jill Hawkins https://effieparks.com/podcast/008-choosing-hope-with-jill-hawkins Cure VCP Disease https://www.curevcp.org/ Global Genes https://globalgenes.org/ NORD  https://rarediseases.org/ EveryLife Foundation https://everylifefoundation.org/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/ Leave a voicemail https://effieparks.com/speakpipe

Fecha de Publicación: 18 de febrero de 2021

Duración: 28 min