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 FROM MINI-GRANT RECIPIENTS

 

We were able to use this to finally get the camera that tracks our daughters vitals throughout the night. We truly cannot thank you enough. The peace of mind it has given our family and the burden it has lifted from us is indescribable. Your generosity means more to us than could even put into words.

Caylee (March Recipient)

My name is Missy and my daughter’s name is Harper. She was recently diagnosed with Rett Syndrome in June after a year looking for answers. This is a journey we never saw coming but one we’re taking head on for our girl. She is the happiest baby and is showing Rett is messed with the wrong girl. We’re so grateful to have won the December mini grant. This is helping us get Harper some add ons for her new medical stroller and a new bed. We’re pulled all over the place with Harper and receiving this grant really was a blessing to us, we can’t thank everyone enough who made it happen.

Missy (December Recipient)

This mini grant came to us in a much needed time! My husband was recently laid off from work which put a huge impact on our finances. Stressed and not knowing what to do, this could not have happened at a better time. The mini grant was enough to pay off one of our bills. We are extremely grateful for this!

Meisha (February Recipient)

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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