Northwest Rett Syndrome Association

05/24/2026

Learn About Exercise: https://bit.ly/4oxwhgZ

Exercise can play a meaningful role in supporting mobility, comfort, and independence for people with Rett syndrome. With guidance from clinicians and caregivers, physical therapy can help maintain skills, ease discomfort, and encourage development through each stage of the condition.

05/24/2026

One infusion. 87% reduction. The first Phase 3 in vivo CRISPR trial just worked. Here's what it proved, why the brain is still a different challenge, and what RSRT — including work by Nobel laureate Jennifer Doudna — is doing about it.

05/19/2026

Learn more about water: https://bit.ly/4qFNdmb

Aquatic exercises can offer children with Rett syndrome a supportive space for movement, comfort, and confidence. Water reduces the effects of gravity, allows gentler motion, and can help with balance, muscle use, and participation at a pace that feels safe.

Here’s a look at why water-based therapy can be such a meaningful option for families and caregivers. Discover more about exercising with Rett Syndrome at the link.

05/19/2026

05/19/2026

This week, as part of presentations to the American Society of Gene and Cell Therapy, Neurogene and Taysha have released quotes from families participating in their Phase 1/2 and REVEAL trials respectively.

A family member of a patient on Neurogene’s Phase 1/2 trial said:

“She holds onto things longer…she is eating pieces of fruit using a fork, a new skill.”

And a family member of a patient on Taysha’s REVEAL trial said:

“She’s gained multiple words – ‘no,’ ‘yeah,’ ‘mom,’ ‘dad’ – makes consistent sounds with meaning – and even says some phrases – ‘ok, bye’ and ‘no more.’”

“These quotes are incredibly heartwarming and inspiring to all of us who care about someone with Rett syndrome.

But we at Reverse Rett know progress is only meaningful if it reaches patients and we won’t stop pushing until it does.”

Andy Stevenson, Co-Founder and Deputy CEO at Reverse Rett.

We will continue to:

Advocate for pace

Push for access

Ensure the Rett community is ready for what comes next

Because ultimately, success is treatments reaching families 💜

You can read our full breakdown of Neurogene’s presentation here:

https://www.reverserett.org.uk/neurogeneupdate/

And our full breakdown of Taysha’s announcement here:

https://www.reverserett.org.uk/taysha-releases-testimonial-from-families-on-their-reveal-102-trial/

05/09/2026

FREE WEBCHAT: Play is more than just fun. It’s how we build engagement, motivation, communication, and meaningful participation. 💜 Join Rett U and our guest speaker, Kerry Hankins-Grider from Tobii Dynavox, for a webinar exploring inclusive and adapted play for AAC users, including gross motor activities, pretend play, sensory experiences, switch-adapted toys, and accessible board games. Learn about practical ideas, research-backed strategies, funding resources, and ways to create play experiences where every child can participate and connect.

Register now! https://zoom.us/meeting/register/_pduZ0JWR_SRxr1t8kxN7A

05/09/2026