“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 allows parents of newborns to receive free whole genome sequencing at birth, putting the state at the forefront of newborn screening.

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