Each February, students of all ages dedicate their precious weekends to play music in my little sister’s honor and raise money and awareness for Taylor’s Tale and our fight against Batten disease.

Polly Greene, my late grandmother’s best friend and a beloved family friend and piano teacher, founded the piano playathon in her personal studio in 2008.

Co-chair Pamela Tsai and other teachers joined Polly’s effort, and the event outgrew her home by year two. Last month, the fifth annual playathon for Batten disease featured 120 students of 17 teachers. They played at three venues in Raleigh, NC and raised about $2,500 for Taylor’s Tale. The event has been covered by multiple TV news stations, including this feature story by UNC-TV.

This is Polly with Emma Ogden – one of her students. Emma loves playing in the playathons. She chose Taylor’s Tale as the topic for a school project; she put 100 percent effort into researching Batten disease and our story on her computer and created this beautiful poster.

We’ve had events and campaigns that have raised more money than the piano playathons.

But these students and their teachers have helped us share our story with a lot of people; I can’t put a price tag on that.

And nothing touches my heart – or fuels my fire to keep fighting the monster – more than angels like Emma. There’s just nothing like kids helping kids.