March of Dimes – Genetic Disease


My son Noah could’ve been saved. I just didn’t know it until it was too late.

Noah was born with a rare genetic disease—one that can be detected through newborn screening. If caught early and treated properly, the survival rate is nearly 100 percent.

But my baby didn’t get that chance. The test that could’ve saved his life sat at the lab—and four days after he was born, Noah was gone.

It’s the most painful lesson I’ve ever learned: A timely newborn screening can be a matter of life or death for an infant. Right now, lifesaving newborn screening programs are at risk—we need Congress to act before it’s too late.

For more than 50 years, virtually every infant born in the United States has benefitted from newborn screening—just a few drops of blood can identify more than 50 conditions. Each year this saves or improves the lives of more than 12,000 babies. But Congress must renew the funding for newborn screening by September 30 or newborn screening could be in jeopardy.

Join me in telling our elected officials: Don’t let lifesaving newborn screening programs expire!

This legislation affects every baby in the U.S.—no matter their family’s income, race or location. Please, take a moment to speak out for all moms and babies today.

This can’t wait: Tell your elected officials to pass the Newborn Screening Saves Lives Reauthorization Act now.

Thank you, for using your voice for this powerful collective message today,

Sarah Wilkerson
March of Dimes Gretchen Carlson Advocacy Fellow