Michigan Rett Syndrome Foundation

LATEST NEWS

  • Sarah Olree

    MRSF offers Resources. Connection. Hope.

    In 2022, a group of mothers brought together by a shared experience — raising children newly diagnosed with Rett Syndrome — found strength and solace in one another. What began as a small circle of fierce, determined moms quickly grew into a powerful community bound by resilience, and hope. In those early days, they rallied together to fundraise for research, exchange vital resources, and provide the kind of understanding only another Rett parent could offer.

    Out of these connections and shared values, the Michigan Rett Syndrome Foundation was born — a Michigan-based nonprofit dedicated to fostering community, offering hope, and empowering families across the state navigating life with Rett Syndrome.

REMARKS

 

I am hopeful that the Michigan Rett Syndrome Foundation will be a source of connection and hope for families living with Rett Syndrome here in Michigan. A home base with information tailored for our needs and our long-term goals…in our state, our counties, our hospitals and our schools. A place where we can get real life tips-and-tricks to help navigate the path we are on but never expected. A place we can come back to for help and connection, now and into the future.

Stacy B.

I feel so much hope and privilege launching this foundation, dreaming of a future full of connection. Walking alongside other Rett families has been an immense privilege, knowing so many strong families and supporters. It gives me hope that we can bring a little relief to fellow Rett families in Michigan who are exhausted and carrying so much. Please join us in experiencing this hope and the privilege of connecting with Rett families of Michigan.

Nicole K.

My hope for MRSF is that it becomes a place where Rett Syndrome families in Michigan never have to feel alone. This journey is one that thrives on connection—whether it’s finding another family who understands, discovering what has helped others along the way, or accessing the resources needed to support your child. I’m so glad you’re here! 

Sarah O.

What is Rett syndrome?

Rett syndrome (RTT) is a genetic disorder that typically becomes apparent after 6–18 months of age and almost exclusively in girls. Rett syndrome is due to a genetic mutation in the MECP2 gene, on the X chromosome. Symptoms include impairments in language and coordination, and repetitive movements.  Complications of Rett syndrome can include seizures, scoliosis, and sleeping problems.

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