International Rett Syndrome Foundation

09/27/2026

This is what showing up for Rett looks like. 💜

This weekend, the Rett community came together across the country and IRSF was grateful to be there.

In Michigan, families gathered for the Michigan Strollathon. In Texas, more than 500 anglers took part in the 15th annual Borracho Pescador, with hundreds more on the waiting list. And in Pennsylvania, families and supporters came together for Rise Up 4 Rett.

Meanwhile, Strollathons brought the community together in Nebraska and Philadelphia yesterday, with Cincinnati stepping out today.

Different cities. Different events. One incredible community — connecting, raising support, and moving Rett forward!

To the families, volunteers, organizers, sponsors, and supporters who made this weekend possible: thank you. We’re proud to show up alongside you. 💜

09/27/2026

Missed our RettEd Webinar Same Gene, Different Rett: Diagnosis, Spectrum, and Family Questions?

The recording is now available to watch on demand. Amitha Ananth and Dominique Pichard break down what diagnostic and classification systems actually measure, where they fit into your child's care plan, and what it looks like to hold the data in one hand and your child in the other.

Watch now: https://youtu.be/aenao1dSKC0

09/26/2026

What does Ari actually look like in day-to-day Rett care?

In this conversation, three Rett parents — IRSF’s Dominique Pichard, MD, MS, Vanessa Peace, and Paige Nues — share how they’re using Ari, Citizen Health’s AI teammate, with their own families.

From bringing years of medical records together and tracking symptoms to preparing for appointments, organizing IEP information, and drafting insurance appeals, they share practical examples of where Ari can help take some of the work off a caregiver’s plate.

They also talk candidly about using AI thoughtfully, privacy and permissions, and what families should know before getting started.

Watch the full conversation, then learn more about Citizen Health and Ari:
https://www.citizen.health/join/irsf

09/25/2026

IRSF’s Clinical Network Director, Carmen Luna, MPH, represented our community at NORD’s Rett Syndrome Clinical Care Expansion Summit, joining conversations about expanding access to specialized care.

Alongside fellow Rett moms and speakers Kathryn Carrol, MD, and Theresa Bartolotta, PhD, CCC-SLP, Carmen brought both professional knowledge and personal experience to the discussion. She also connected with Judy Weisenberg, MD, co-director of the Rett Spectrum Clinic at St. Louis Children’s Hospital.

Bringing these perspectives together is an essential part of strengthening Rett care. We’re proud to work alongside families, clinicians and partners to help ensure our community’s needs inform the conversation, with a shared goal of helping more individuals with Rett access the knowledgeable, coordinated care they deserve.

09/24/2026

Registration is now open for the next Rett in Focus webinar!

Join IRSF and Acadia Pharmaceuticals on Tuesday, October 6, at 2 p.m. ET for Rett in Focus: When Research Can’t Answer Every Question, a 30-minute conversation about how expert consensus may help shape care in Rett syndrome when research alone does not provide clear guidance.

Attendees will learn how the Delphi method has been used in Rett syndrome to bring experts together, identify areas of agreement, and develop practical recommendations for clinicians and families. Using examples from across Rett care, including a 2026 consensus study on the real-world use of a treatment option for Rett syndrome, the discussion will explore how expert experience can help advance our understanding and support more informed conversations and care decisions.

Register: https://us02web.zoom.us/webinar/register/WN_RrCMUaicRP20I7_oo7uRsg

09/23/2026

💜 October looks good in purple. 💜

Our new Rett Syndrome Awareness Month merch has officially dropped! Wear your purple, start conversations, and help raise awareness for Rett syndrome all October long.

And make sure you’re geared up for Purple Out Weekend, October 16–18! Whether you’re at work, school, home, or out in your community, throw on your purple and show the Rett community just how powerful awareness can be.

🛍️ Shop the new collection and get ready to Purple Out with us at https://www.rettsyndrome.org/get-involved/raise-awareness/

Because this October, purple isn’t just a color—it’s a statement. 💜

09/22/2026

Missed our latest Rett in Focus webinar? The recording of Rett in Focus: Neurogene Community Update is now available on YouTube!

Moderated by Dominique Pichard, MD, MS, Chief Scientific & Medical Officer at IRSF, the conversation features Rachel McMinn, PhD, Founder and Chief Executive Officer of Neurogene, and Kimberly Spong, RN, MBA, Executive Director of Patient Advocacy & Engagement at Neurogene.

Together, they discuss recent developments in the NGN-401 clinical program, what Neurogene Inc. anticipates will come next, and new resources and community initiatives for families, including Neurogene Cares and its Caregiver Advisory Council.

Watch the full webinar: https://youtu.be/oectVknuMFw

Still have questions? Email Neurogene at [email protected].

Watch the September 9, 2026 edition of Rett in Focus: Neurogene Com...

09/22/2026

Fall event season is underway, and one of the best parts is getting to spend time with the Rett community in person. 💜

This past week, IRSF team and Board members were out in the community at events across the country.

In Olney, Maryland, Board Chair Steve Wood joined Board Member Steve Marconi at the second annual Charlotte’s Raise a Glass for Rett, named for Steve and Katie’s daughter, Charlotte. Friends, family, and supporters gathered at Lone Oak Brewery for an evening together in support of IRSF, with this year’s event setting its sights on raising more than $50,000.

In New Jersey, Chief Development Officer Staci Almager and Allison Fitzgerald joined the New Jersey Rett Syndrome Association for its sold-out Drive for the Cure golf tournament, where a beautiful fall day brought record sponsorship and support and raised $20,000.

And in Troy, New York, Staci joined Chief Medical & Scientific Officer Dominique Pichard, MD, at the fifth annual Rett Fest. More than 3,000 people came together for a day of music, activities, and community, including five families living with Rett syndrome and two boys with Rett.

Each of these gatherings is different, but they share something important: people coming together around the individuals and families at the heart of the Rett community. For us, showing up means being there to listen, connect, celebrate, and strengthen the relationships that keep this community moving forward.

There’s much more to come this fall, and we’re grateful for every opportunity to be there.💜

09/21/2026

📣 Coming up soon! Don’t miss our next RettEd webinar on understanding genetic reports, diagnostic classifications, genotype-phenotype patterns, and clinical severity scores.

We’ll talk about what this information really means for families — and how to keep your child at the center of care. 💜

Have a question you’d like our experts to address? Send it in advance!

👉 Register here: https://us02web.zoom.us/webinar/register/WN_3UrAkvixRtCRGjUiHbbreA #/registration

We hope you’ll join us!

09/20/2026

What if your teenager or adult had a team of their own?

A place where teammates are waiting to see them, where their decisions affect the outcome of the game, where they can laugh, compete, celebrate, and build friendships with peers who understand them.

AT4ALL’s Virtual International Rett Team Games League isn't just about learning Flip 7. It's about giving teens and adults with Rett syndrome the opportunity to experience something their siblings and peers often take for granted: being part of a team, having an extracurricular activity of their own, competing toward a championship, and belonging to a community of friends.

For the past six years, Assistive Tech 4 ALL’s virtual friendship groups organized and run by Judy Lariviere, have shown that distance doesn't have to be a barrier to developing meaningful relationships. When the same group members meet regularly online, they develop confidence, strengthen communication skills, and create friendships that continue well beyond the sessions. All of the group members love to learn and play new games with one another. One of the greatest joys is watching personalities shine as players laugh, encourage one another, celebrate victories, and experience the excitement of friendly competition in an environment created just for them. AT4ALL’s Virtual International Rett Team Games League expands this opportunity on a global level!

The League kicks off at the beginning of October during Rett syndrome Awareness month! Don’t wait, sign up now at: https://form.jotform.com/261872892363064

Age categories include:

Middle School – Grade 6 - 8

High School I – Grades 9 - 10

High School II – Grades 11 - 12

Transition Programs/High School Graduates

Adult – 22 years of age and older