Sarah VaronFoundation for Rett Syndrome Research
sarahvaron.orgPrint edition · August 2026
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A family's race toward a cure

Every day matters.

The Sarah Varon Foundation exists to help accelerate research, raise awareness, and move the Rett syndrome community closer to a cure.

Help fund the future Meet Sarah
Portrait of Sarah wearing a deep red feathered wrap
Sarah
Sarah and Alexandra at Baker Beach
Sisters
Hope isaction.
1 in 10,000female births are affected by Rett syndromeFDA source

Our mission

Turn love into momentum.

We believe research can change the future of Rett syndrome. Our purpose is to help make that change happen sooner.

01

Accelerate research

Support the science moving treatments forward and bringing a cure closer.

02

Build awareness

Help more people understand Rett syndrome and the lives behind the diagnosis.

03

Stand with families

Connect families with trusted organizations, current information, and hope.

Sarah smiling in front of Christmas lights
Sarah during Christmas
Born05·20·01

Sarah's story

A life larger than a diagnosis.

Sarah was born on May 20, 2001. During her first year, she reached the same early milestones as her older sister—rolling over, sitting, babbling, and connecting with everyone around her.

Around 11 months, her development began to change. After months of therapy, appointments, and testing, Sarah tested positive for Rett syndrome on December 5, 2002.

The diagnosis changed the path. It never changed who Sarah is: joyful, deeply connected, and surrounded by a family determined to make every day count.

“For us, it is the day-to-day faith that we can make a difference—even by cutting the time to a cure down by one day—that drives us.”Christine and Sol Varon, Sarah's parents

Understanding Rett syndrome

Rare. Genetic. Life-changing.

Rett syndrome is a rare neurological and developmental disorder that primarily affects females and, more rarely, males. It is most often caused by a change in the MECP2 gene, which is essential to healthy brain development and function.

Read the NIH overview
6–18months is the common window when skill loss becomes noticeable
MECP2is the gene associated with most classic Rett syndrome cases
1stFDA-approved Rett treatment arrived in 2023; research continues

People with Rett understand and connect.

Movement and speech can be profoundly affected, but they do not define a person's awareness, personality, or capacity for communication. Eye gaze, assistive technology, and attentive partners can open meaningful ways to express choices and relationships.

Research progress

Hope has evidence behind it.

The scientific landscape has changed dramatically since Sarah's diagnosis. Each milestone reinforces the urgency of the next.

  1. 1999

    The gene is identified

    Researchers identify MECP2 mutations as a primary cause of Rett syndrome.

  2. 2007

    Reversal in a model

    A landmark mouse study shows that Rett-like symptoms are not necessarily permanent.

  3. 2023

    A first approved treatment

    The FDA approves trofinetide for adults and children age two and older—a milestone, but not a cure.

  4. Now

    A growing research pipeline

    Scientists are advancing genetic medicines, next-generation treatments, and better care.

Sources: U.S. FDA, IRSF, and RSRT.

Sarah with Christine and Sol Varon

From Sarah's parents

We can make a difference.

Our single purpose is to help find a cure for Rett syndrome. We believe that supporting courageous researchers can move that day closer, and that every day saved matters to Sarah and families everywhere.

We thank you for your support, your generosity, and your willingness to join us in this race.

Christine & Sol Varon

Trusted resources

Start with reliable information.

Families & care

International Rett Syndrome Foundation

Trusted information, clinics, family support, advocacy, and the Rett treatment pipeline.

Visit resource Research

Rett Syndrome Research Trust

Cure-focused research strategy and updates on emerging therapeutic programs.

Visit resource Medical overview

National Institute of Neurological Disorders

An evidence-based overview of Rett syndrome, diagnosis, symptoms, and treatment.

Visit resource

This website provides general information and is not a substitute for medical advice. Families should consult qualified healthcare professionals for care decisions.

Join the race

Move the clock forward.

Your support helps fund research, strengthen family resources, and keep a cure at the center of the conversation.

Donate through IRSF Contact the foundation