A lot has happened since my family and I shared our story with 160 people packed into a Charlotte living room:
- One 501(c)3 non-profit organization
- Two websites (one retired)
- Facebook, Twitter and YouTube pages
- Two blogs (one retired) and 358 blog posts
- 30+ events
- 10 grants for research
- $411,154 contributed to the fight against Batten disease
We still don’t have an approved treatment for any form of Batten disease, though. And at home, we lose pieces of my little sister every day.
But I’m still writing.
You’re still reading.
We’re still fighting.
And here’s a little secret: Taylor’s Tale might just have saved its best for 2013 and beyond.
Taylor’s own fight becomes more difficult every day.
But the fight inspired by her courage and ignited by the 160 generous people who joined us for Chapter One has new life.
Stick with us a while longer.
We’re going to stick it to Batten disease.