Batten Hope

Here's how you can help:

1 — DONATE to BATTEN HOPE

Single gifts, monthly donations, planned giving... we need your help to raise the remaining $200k needed for a CLN7 treatment.

2 — HOST A FUNDRAISING TEAM/EVENT

We love to share our story and our vision for ending rare disease. Gather friends, share our story and help us to raise funds for a local event - or plan your own! Ask us how.

3 — SHARE

Stay involved - follow our social pages, sponsor a Facebook fundraiser for Jojo, and share our stories of hope!

Latest updates from our Blog

Stay current on how Joseph is doing, milestones toward our Batten CLN7 trial, and on the work we are doing at Batten Hope to give Joseph a chance at life. Together we can end Batten CLN7!

Giving Thanks in 2019

Gina Hann November 19, 2019

This journey has brought us to today, so are we most thankful for? Every. Day. Awesome.

Why kindergartners should rule the world.

Gina Hann March 2, 2019

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?

Gina Hann February 11, 2019

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!

Gina Hann February 6, 2019

Awesome news - another milestone in the journey to clinical trial!

The Research Team

As of yet, there is no cure for Batten Disease. However, we are currently working on building a clinical trial for CLN7. We have partnered with a team of scientists and doctors at UT Southwestern and Children’s Health in Dallas, who have made significant progress in development that will enable a potential trial for Joseph’s form of Batten CLN7 and other neurodegenerative diseases affecting children. We have committed to serving the vision of this team’s work toward realizing gene therapy trials in Dallas, starting with Batten CLN7.