As a retired nurse, I’ve cared for families facing the unimaginable: a child with a rare disease and no treatment options. Half of all rare disease patients are children, and 95% of these conditions still don’t have an FDA-approved therapy.
The Give Kids a Chance Act is a bipartisan, no-cost solution to change that. It builds on a proven program that has already delivered breakthrough treatments—like one for pediatric high-risk neuroblastoma—that otherwise might not exist. It also strengthens incentives for researchers to focus on kids who are often overlooked because their conditions are so rare.
This isn’t about politics. It’s about giving families hope. Speaker Johnson has always been a strong advocate for life and for Louisiana families, and I know he understands how urgent this is. I’m grateful to Congresswoman Julia Letlow for cosponsoring the bill and standing up for children who need it most. We already have one North Louisiana champion supporting these kids; now we need Speaker Johnson to do the same.
I respectfully urge Speaker Johnson and Congress to include the Give Kids a Chance Act in the September funding package. Families facing the rarest and toughest diagnoses shouldn’t have to wait for hope.
– Lu Jones, RN
