Connor (age 3) has A-T and shows off one of Dr. Gupta’s wearable devices that measures how he moves.
Dear Friends,
We are excited to share the following update from Dr. Anoopum Gupta to the A-T families who have been participating in his project to find better ways to measure A-T. We are so grateful to him, to the families, and, of course, to our donors and fundraisers who help to make it all happen!
All the best,
Jennifer
Jennifer Thornton, Executive Director
Dear Families,
I wanted to share a few exciting updates on our research mission, which is to discover better measures of function for A-T that can be used to accelerate treatment trials and ultimately find a cure.
With the onset of the pandemic two years ago, we quickly adapted our focus to three technologies that can be used at home: a sensor on the wrist to measure continuous movement, a microphone to measure speech, and a computer mouse to measure reaching movements.
With the incredible collaboration and support from A-T families and the A-T Children’s Project, we have been able to send devices all over the country and generate a rich dataset for discovery. We have developed sophisticated algorithms that can detect movement patterns from the wrist sensor that are strong candidate outcome measures for A-T. And, we have discovered similarly strong measures from the speech and computer mouse technologies.
Our quest for better measurement tools is not over! We want to make sure individuals with A-T of all ages, sexes, ethnicities, and races are fully represented so that these tools can benefit everyone. We also need to track these measures over the next 2-3 years to evaluate how they change over time in different age groups and to generate the data that companies need to use the measures in treatment trials. We have put in a large grant proposal to the National Institutes of Health to raise additional funds to support and expand this effort and we are happy to share that we received very promising feedback on the first round of reviews!
There is no way we could do this work without your continued willingness to donate your time and energy despite all the many other demands. We want to thank you and let you know how motivated we are to work alongside you and the rest of the research community toward a cure for A-T.
All my best,
Anoopum
Anoopum Gupta, MD, PhD
Massachusetts General Hospital