Lets talk about learnings on the what, why and where of making it work as a rare disease parent....Read More
Here's how you can help:
Batten Hope is a non-profit working to fund life-saving gene therapy for children fighting terminal Batten CLN7 disease. Support Joseph and his friends - we need to raise $300,000 in 2018 to complete our current project and get Joseph to treatment. You can help:
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!
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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!
Welcome to being a rare disease parent. I haven’t been here that long, but I have learned a few pointers so far...Read More
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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.
The Batten Hope Fund of Dallas Foundation
The Dallas Foundation serves as a leader, catalyst and resource for philanthropy by providing donors with flexible means of making gifts and bequests, the income from which primarily supports the charitable causes of the city and county of Dallas. Batten Hope is a Fund of the Dallas Foundation, allowing charitable donations to be received under their 501(c)(3) status.