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…
One year after a “terminal” diagnosis…
One year ago we were told to make end of life plans. This is what has happened since…