Crush Rett Syndrome

Thank you for following along this month! We will continue to post updates about the progress of Rett syndrome research the human clinical trials. Stay strong and continue the fight to crush Rett syndrome!

2023 saw the first human clinical trials begin for Taysha’s gene therapy and the first two patients dosed. Initial reports are extremely promising of a reversal of symptoms. Our cure is within reach for the first time ever!

Human trials started THIS YEAR. For the first time, a REVERSAL of symptoms is on the horizon

Rett Syndrome causes more physical disability than intellectual, so presume competence. Talk to them even if you don't see an expected response. Anyone with a physical disability should be presumed to be intellectually competent.

When many parents start to see their children leave home for jobs or college, parents of Rett Syndrome children have to figure out what the future holds for themselves and their child. Loving, safe, and consistent care can be hard to find and financially draining.

While their friends feel like they are constantly driving their teenagers to various activities, parents of Rett Syndrome children find themselves more and more unable to participate in social events. Seizures, wheelchair accessibility, anxiety, and simply exhaustion can cause this. But also, friends and family may stop inviting them to their gatherings because they aren't able to or prepared to make the accommodations needed.

After years of being your child's sole caregiver, it can be exciting and scary to send your child to school that first day. But when your child can't speak, can't defend themselves, may not be able to walk, and likely is in a diaper, it is a cause for great anxiety. How will a stranger know what your child needs? And when they get home, how will you know if they were treated well and their needs were met?