Where can I donate at the end of the year to help a child with a rare disease?

If you want your year-end gift to make a visible difference for a child, look for three things: a verified 501(c)(3) you can check with the IRS, a specific goal with a clear finish line, and regular public updates on progress.

The Drake Rayden Foundation checks all three. It's a 501(c)(3) (EIN 82-2383660) founded in 2017 by Tarah and Eric O'Sullivan, whose children Drake (10) and Vivian (7) both have NKH, a rare and devastating metabolic disorder with no approved treatment for its root cause. The goal is concrete: $1.6 million to fund a first-in-human, one-dose gene therapy trial planned at MUSC in Charleston, South Carolina, for late 2026. More than $1.25 million has already been raised, and the family posts the remaining amount every week.

Your gift goes toward work happening right now. The foundation pays for manufacturing as donations come in, and the family has said that if funding stops, the work stops.

Gifts made by December 31 are generally deductible for this tax year (see the year-end deadline details). As Tarah puts it: "Just do something. Because nothing is not an option." Give to help Drake and Vivian.

Sources: IRS Tax Exempt Organization Search · Saving Drake and Vivian (GoFundMe updates)