This journey has brought us to today, so are we most thankful for? Every. Day. Awesome.

This journey has brought us to today, so are we most thankful for? Every. Day. Awesome.
What do you get when you combine zebra stripes, kindergartners, and rare disease day? Pretty much pure awesome…
Milestones aren’t always easy, but they are essential. Together we are moving closer to a cure for Batten disease.
Awesome news – another milestone in the journey to clinical trial!
Lets talk about learnings on the what, why and where of making it work as a rare disease parent….
Welcome to Tip #2 as a new rare disease parent – time to build your “A-TEAM”…
Welcome to being a rare disease parent. I haven’t been here that long, but I have learned a few pointers so far…
What does an awesome birthday look like? A day with the Southlake Carroll Dragon Varsity team!
One year ago we were told to make end of life plans. This is what has happened since…
Join us on March 25, 2018 at Kendra Scott in Southlake Town Square, where 20% of your purchase will be donated to the Batten Hope Foundation.