Maryland Stroll for IRSF

12/31/2025

12/20/2025

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For Americans living with rare diseases, the Rare Pediatric Disease Priority Review Voucher Program is a vital tool. Yet its reauthorization is at risk.

11/17/2025

Please join us in welcoming Dr. Bhala Rao, our new Director of Translational Research at the International Rett Syndrome Foundation!

With more than 15 years of experience in molecular biology and biochemistry—and deep expertise in RNA biology, RNA-targeting therapeutics, and pre-clinical science—Bhala will help guide IRSF’s scientific investment strategy and oversee our translational research portfolio. His leadership will play a key role in advancing promising discoveries toward meaningful treatments for individuals living with Rett syndrome.

Originally from near Mumbai, India, Bhala now lives in the Boston area with his wife, a cancer biologist, and their two children. We’re thrilled to have him join our team, driving hope through progress. 💜

11/12/2025

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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

11/07/2025

Happy 56th Birthday to my sister Teresa. We love you..❤️

10/22/2025

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October is Rett Syndrome Awareness Month. 💜

Though first identified in the 1960s, Rett syndrome did not receive worldwide recognition as a distinct disorder until 1983. Through the 1980s and 1990s, diagnostic criteria were developed and research continued, culminating in the landmark discovery of the MECP2 gene mutation as the primary cause of Rett by Dr. Huda Zoghbi’s lab in 1999.

In 2006, the Natural History Study began collecting vital data on the progression of Rett syndrome—data that continues to guide care standards and inform today’s gene therapy clinical trials. And in 2023, after decades of relentless research and advocacy, the FDA approved the first-ever treatment for Rett syndrome, marking a historic milestone for the entire community.

Each discovery, study, and breakthrough over the past 40 years has brought us closer to better treatments and, one day, a cure. 💜 But we're not done yet. This October, we need your help to raise awareness and critical funds in our fight against Rett. Learn more and get started today at rettsyndrome.org/october.

10/21/2025

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10/17/2025

The Purple OUT starts NOW! How will you go purple to raise awareness for someone you love with Rett syndrome this weekend? Drop a comment below to let us know how you plan to go purple this year and help give ideas to others. Learn more at rettsyndrome.org/october and make sure to share your purple photos and stories here: https://app.smartsheet.com/b/form/457215b476ba470aa0e3f6d286d5c602

10/16/2025

10/15/2025

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)

10/14/2025

While Rett syndrome IS genetic, it is NOT an inherited disorder. This is because it is typically caused by a mutation on the X chromosome. This October, in honor of Rett Syndrome Awareness Month, learn more about from the International Rett Syndrome Foundation: https://www.rettsyndrome.org/about-rett-syndrome/