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’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…
Fox News 4, Southlake, UTSouthwestern and Jojo together to fight against Batten
Thank you FOX NEWS 4 Dallas for sharing our Batten Hope Story!
Batten Hope Radio Interview – Jeff Crilley Show
Want to learn more about the gene therapy trial we are working for? Listen to our radio interview with Dr. Minassian on the Jeff Crilley show!