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Today, in a letter to the Rett community, Neurogene Inc. shared updates on its Phase 1/2 clinical trial of investigational gene therapy NGN-401. Read the full community letter here: neurogene.com/wp-content/upl…

In a letter to the Rett syndrome community today, Taysha Gene Therapies provided updates on its clinical trial of investigational gene therapy TSHA-102 shared last week at IRSF's Rett Syndrome Scientific Meeting and more. Read the full letter here: tayshagtx.com/wp-content/upl…

After a close encounter with animals at the zoo and some fun in the sun at the beach, presenting sponsor Acadia Pharmaceuticals invites you to enjoy a complimentary breakfast on Saturday during their Discovering DAYBUE Educational Event! Learn more and RSVP now at rettsyndrome.org/rettaway!

Right now, the US Senate is reviewing legislation that could deeply impact Medicaid. At the same time, Congress is determining which conditions will be eligible for federal research funding. You have the power to influence both using our advocacy tool at rettsyndrome.org/advocacy.

Congratulations to Nupur Garg, PhD, our VP of Research, for completing the Blue Star-BRIDGES Certificate Program, co-developed by Genetic Alliance and Tufts Clinical and Translational Science Institute (tuftsctsi)! 📸: Dr. Garg at the 2025 IRSF Rett Syndrome Scientific Meeting.

IRSF invites you to this live RettEd session, which will focus on understanding the male Rett spectrum and the unique challenges families face in receiving an accurate diagnosis. Register today! Join us for an eye-opening and impactful discussion: us02web.zoom.us/webinar/regist…

Last month, IRSF’s Katie Busch joined Rett mom Mickie McCool at the Women In Government Conference to speak to 300+ legislators and attendees about America’s Unseen Workforce: The Cost of Family Caregivers. Thank you for lifting up caregiver voices! 💜 rettsyndrome.org/advocacy

We're so excited for next week's RettAway! A final shoutout to the sponsors who help to make this event possible: Acadia Pharmaceuticals, Neurogene Inc., and Taysha Gene Therapies. Wishing safe travels to the 70+ families heading to San Diego in the coming days! More rettsyndrome.org/rettaway

Don't forget to register! Our next live RettEd session is next Tuesday! Join Drs. Talia Thompson and Tim Benke for an important conversation on understanding the male Rett spectrum. Register today: us02web.zoom.us/webinar/regist…

We’re so grateful for families like the Vissers, who pour their hearts into raising awareness and building community through events like last week’s Goals Fore Gracie! 💜 Thank you, too, to IRSF board member—and proud grandfather to twin girls with Rett—Steve Wood for attending!

WATCH NOW: The recording of our live webinar "New Research, New Hope: The Male Rett Spectrum" is now available. If you didn't get a chance to join us live, you can watch it on demand now at this link or in our RettEd Video Library: youtu.be/DQNEPk3Muj8