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…
Thank you FOX NEWS 4 Dallas for sharing our Batten Hope Story!
Jojo had a great weekend with the Southlake Dragons – awesome!! We love these young men and their heart!
We are about 65% to our first milestone: First Clinical Trial Vector Development. Special thanks to our teams!
Engineers and Family. A video about Batten Hope
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!