Maryland Stroll for IRSF

👏🏿👏🏿

Congress can save lives with Rare Pediatric Disease PRVs - MinnPost For Americans living with rare diseases, the Rare Pediatric Disease Priority Review Voucher Program is a vital tool. Yet its reauthorization is at risk.

🙏🏾

Caregiving for a child with Rett syndrome is an act of endless love — and when that child is gone, the silence can feel unbearable. For three mothers — Elaine, Jenny, and Suma — that silence became a shared strength. Together, they are leading Life After Rett, a Facebook community where parents can grieve, heal, and remember their children with others who understand.

Read their story of courage, compassion, and connection💜: https://www.rettsyndrome.org/life-after-rett

For many families of males with Rett syndrome, the path to diagnosis and support has been different and often more uncertain. But the reality is clear: Rett doesn’t look the same in every child—and boys with Rett deserve to be seen, supported, and included.

New research funded by IRSF brings their experiences into focus and offers new insight into how Rett may look different in males. From faster regression to more varied developmental paths, these findings challenge long-held assumptions and underscore the importance of recognizing and including every individual affected by this disorder.

Discover more findings in our newest blog post here: https://www.rettsyndrome.org/male_rett_spectrum/

(A version of this story appears in the 2025 Rett Gazette)