On May 31, 2023, the A-T Children’s Project sent the below email to A-T families in the United States and Canada announcing that researchers are interested in testing a new device that has the potential to help people with A-T move better. As a first step, the A-T Children’s Project is collecting videos of people with A-T who have dystonia, a specific movement difficulty seen in some people with A-T.

Hi A-T Families,

I am sending you this note because researchers are interested in testing a new device that has the potential to help people with A-T move better.

While this device could potentially address several symptoms of A-T, its developers and collaborators have decided to focus initially on a specific movement difficulty called dystonia that is seen only in some people with A-T. Dystonia causes involuntary muscle contractions which can result in abnormal twisting or repetitive movements, leading to awkward postures or tremors. If someone with A-T does develop dystonia, it usually appears during the teen or adult years, but it can show up earlier.

Researchers would like to test a new non-surgical, non-invasive way to stimulate specific regions of the brain using ultrasound waves to see if it can help people with A-T who have dystonia.

If your family member with A-T has dystonia and you would like to learn more, please complete a brief form and upload a video here. The video should show your child’s specific dystonia symptoms that, if improved, would make a meaningful difference. I’ll then share the video with researchers.

Thank you in advance for your help! Please don’t hesitate to call me at 954-481-6611 or email me if you have any questions.

All the best,

Jennifer

Jennifer Thornton, Executive Director

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