I am writing to urge you to support HB 433. As a parent of a child with a rare disease, tuberous sclerosis complex (TSC), I will tell you that life is not easy. It took 2 years for Evan to be diagnosed with TSC and there was time lost in his treatment. Updating Virginia’s screening law can help families with early diagnosis leading to early medical intervention and treatment. This is a vital step in giving every baby born in Virginia the best chance at getting the best treatment possible if they are born with a rare disease! When my husband and I decided to become parents we knew we would encounter challenges: teaching new skills, watching our kids succeed and fail, navigating the terrible twos and the teenage years, learning to drive, etc. What we did not expect was watching our son, Evan, have literally thousands of seizures, undergo 2 rounds of brain surgery involving 5 separate surgeries, spending holidays and birthdays in hospitals, helping to navigate learning disabilities, managing kidney tumors growing larger each year, watching Evan learn to walk 4 times and holding his had in a hospital on two occasions where he almost died. This is a reality nobody should have to endure. My heart aches when I hear of babies and children not getting treatment until much later that they should, especially when that delay can lead to permanent damage. Please support HB 433 and babies who deserve the best possible chance in this world.

The Rare & Ready Coalition and the rare disease community we serve in Virginia support HB 433. HB 433 provides a much-needed update to Virginia’s newborn screening law to keep pace with medical advances. We commend Virginia for enacting legislation in 2025 to align its screening program with the Recommended Uniform Screening Panel (RUSP). Unfortunately, shortly thereafter, the federal Advisory Committee on Heritable Disorders in Newborns and Children, which had guided RUSP inclusion, was terminated, creating serious uncertainty around the future review of screening conditions. Please vote favorably for HB 433 to establish a process for considering non-RUSP conditions and create a horizon-scanning mechanism to identify emerging conditions for state review. Every condition added to the newborn screening panel represents babies saved through earlier diagnosis and intervention.