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…
Why participate in a CLN7 natural history study?
Milestones aren’t always easy, but they are essential. Together we are moving closer to a cure for Batten disease.
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 have learned as a rare disease parent – Tip #3
Lets talk about learnings on the what, why and where of making it work as a rare disease parent….
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!
One year after a “terminal” diagnosis…
One year ago we were told to make end of life plans. This is what has happened since…
Fox News 4, Southlake, UTSouthwestern and Jojo together to fight against Batten
Thank you FOX NEWS 4 Dallas for sharing our Batten Hope Story!