“Please, not that one” Adam Anderson and his wife Brianne thought near the start of their rare disease journey when a doctor listed Tay-Sachs Disease as a potential diagnosis for their young son Drew. Rarer than rare, this genetic metabolic disorder causes progressive brain and spinal cord damage that can lead, often, to death in early childhood.
80% of rare diseases have a genetic origin. Hundreds of millions of people around the world suffering from a rare disease can trace the root cause of their symptoms back to an abnormality in their genetic code. For generations, there was no way for doctors to track this. But advances in genetic testing have made it so we can unlock the secrets hidden in our DNA faster than ever before.
After losing Drew in 2019, Anderson’s life took on a new path. He ran for local office in Florida and became a leader in rare disease policy, creating a new genetic screening program that allows parents of newborns to receive free whole genome sequencing at birth, putting the state at the forefront of newborn screening.
Chapters:
01:18 Introduction
03:38 Drew’s Story
17:01 Where I’m supposed to be
21:41 The landmark Sunshine Genetics Law
31:07 It starts at birth
Watch the last two episodes of The Path:
• ‘The Story I Never Thought I Would Tell’: https://youtu.be/-SD8-YcQdb4
• ‘This Isn’t Normal, And It Isn’t Pain Free’: https://youtu.be/7iUQav3gFy4
Read about the Florida Institute for Pediatric Rare Disease: https://med.fsu.edu/iprd/home
Join us in advancing awareness and understanding of rare diseases: CNBC.com/cures
Produced by: Katie Kramer, Brad Quick, Kelly Lin, Leanne Miller
Edited by: John Lazration
Camera: David Grogan, Leroy Jackson, Tara McCurrie, Marco Mastrorilli, Nick Colavito
Audio: Everett Wong
Graphics by: Jason Reginato, Lindsey Jacobson
Additional Footage: Anderson Family, Florida State University, The Florida Channel
For access to live and exclusive video from CNBC subscribe to CNBC PRO: https://cnb.cx/42d859g
» Subscribe to CNBC TV: https://cnb.cx/SubscribeCNBCtelevision
» Subscribe to CNBC: https://cnb.cx/SubscribeCNBC
» Watch CNBC on the go with CNBC+: https://www.cnbc.com/WatchCNBCPlus
Turn to CNBC TV for the latest stock market news and analysis. From market futures to live price updates CNBC is the leader in business news worldwide.
Connect with CNBC News Online
Get the latest news: http://www.cnbc.com/
Follow CNBC on LinkedIn: https://cnb.cx/LinkedInCNBC
Follow CNBC News on Instagram: https://cnb.cx/InstagramCNBC
Follow CNBC News on Facebook: https://cnb.cx/LikeCNBC
Follow CNBC on Threads: https://cnb.cx/threads
Follow CNBC News on X: https://cnb.cx/FollowCNBC
Follow CNBC on WhatsApp: https://cnb.cx/WhatsAppCNBC
https://www.cnbc.com/select/best-credit-cards/
#CNBC
#CNBCTV
What If We Can Get To Them Before They Have Symptoms?: How Florida Passed The Sunshine Genetics Law
