Public Comments for: HB433 - Newborn screening; evaluation of disorders for inclusion, process for considering other disorders.
Last Name: Rose Organization: Humanity Locality: Virginia

For Democrats and Democrat Socialists: "The Founders knew that a democracy would lead to some kind of tyranny. The term democracy appears in none of our Founding documents. Their vision for us was a Republic and limited government." - Walter E. Williams "Most of the great problems we face are caused by politicians creating solutions to problems they created in the first place." -Walter E. Williams "(F)or 50 years, the well-meaning leftist agenda has been able to do to blacks what Jim Crow and harsh discrimination could never have done: family breakdown, illegitimacy and low academic achievement." ~ Walter E. Williams “You will never understand bureaucracies until you understand that for bureaucrats procedure is everything and outcomes are nothing.” -Thomas Sowell “Socialism is a wonderful idea. It is only as a reality that it has been disastrous. Among people of every race, color, and creed, all around the world, socialism has led to hunger in countries that used to have surplus food to export.... Nevertheless, for many of those who deal primarily in ideas, socialism remains an attractive idea -- in fact, seductive. Its every failure is explained away as due to the inadequacies of particular leaders.”-Thomas Sowell "When the history of the 20th century is finally written, one of its key features will be the wanton slaughter of more than 170 million people, not in war, but by their own government. The governments that led in this slaughter are the former USSR (65 million) and the Peoples Republic of China (35-40 million). The point to remember is that these governments were the idols of America's leftists. Part of the reason for these and other tyrannical successes was because the people were first disarmed." -Walter E. Williams "Democracy and liberty are not the same. Democracy is little more than mob rule, while liberty refers to the sovereignty of the individual." -Walter E. Williams "There are people in need of help. Charity is one of the nobler human motivations. The act of reaching into one's own pockets to help a fellow man in need is praiseworthy and laudable. Reaching into someone else's pocket is despicable and worthy of condemnation." -Walter E. Williams

Last Name: Moss Organization: TSC Alliance Locality: Annandale, VA

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.

Last Name: Lato Organization: Rare & Ready Coalition Locality: Richmond

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.

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