Foundation for Batten Hope

Batten disease is a neurodegenerative disease that affects children through blindness and mobility loss, with an onset similar to Alzhiemer's, Parkinsons and epilepsy. Batten Hope was founded by a Dallas area family when their 6 year-old son Joseph received this terminal diagnosis in 2017. In the months that followed they discovered that the possibility of a life saving treatment existed through gene therapy at UT Southwestern and Children's Health, but that funding and time would be the primary obstacles confronting them and other families facing a similar diagnosis.

The hope of a treatment and the knowledge that others could benefit from their work motivated the Hann family to dedicate themselves to funding the therapy in the hopes of changing the outcome of the disease not only for Joseph, but for all children diagnosed with this rare form of Batten disease. Today, Batten Hope is a fund of the Dallas Foundation, and has raised over $1 million to help fund the development of a life-saving clinical trial, and is part of an international group of families and advocates fighting to change the fate of children facing rare neurodegenerative diagnosis.

The pillars of the Batten Hope Mission include:
1. Save lives through the funding of a Phase I clinical trial for Batten disease at UT Southwestern and Children's Health, and promising applied research programs that will end Batten disease.
2. Increase the accessibility of gene therapy to rare disease families through support and development of programs focused on improvements in efficiency of gene therapy technology.
3. Serve rare disease families through support, advocacy and partnership in the development of their life-saving gene therapy programs.

Our Needs

In 2019, Batten Hope is working to raise over $300,000 to fund safety studies for life-saving Phase I clinical trial for Batten disease .