This journey has brought us to today, so are we most thankful for? Every. Day. Awesome.
Why kindergartners should rule the world.
What do you get when you combine zebra stripes, kindergartners, and rare disease day? Pretty much pure awesome…
Building a CLN7 Clinical Trial – the natural history study is here!
Awesome news – another milestone in the journey to clinical trial!
Top five tips I’ve learned as a rare disease parent – Tip #2
Welcome to Tip #2 as a new rare disease parent – time to build your “A-TEAM”…
Top five tips I’ve learned as a rare disease parent – Tip #1
Welcome to being a rare disease parent. I haven’t been here that long, but I have learned a few pointers so far…
Southlake Carroll Dragons for Hope – Happy Birthday Jojo!
What does an awesome birthday look like? A day with the Southlake Carroll Dragon Varsity team!
Fox News 4, Southlake, UTSouthwestern and Jojo together to fight against Batten
Thank you FOX NEWS 4 Dallas for sharing our Batten Hope Story!