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Giving Thanks in 2019

Author : Gina Hann Date : November 19, 2019 Comment : No Comments

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

Category : Blog batten, batten disease, clinical trial, cln7, gene therapy, hope, joseph, Rare Disease Read More

Why kindergartners should rule the world.

Author : Gina Hann Date : March 2, 2019 Comment : No Comments

What do you get when you combine zebra stripes, kindergartners, and rare disease day? Pretty much pure awesome…

Category : Blog batten disease, cln7, rare disease day, stripes Read More

Why participate in a CLN7 natural history study?

Author : Gina Hann Date : February 11, 2019 Comment : No Comments

Milestones aren’t always easy, but they are essential. Together we are moving closer to a cure for Batten disease.

Category : Blog batten disease, Childrens medical center, clinical trial, gene therapy, natural history study, UT Southwestern Read More

Building a CLN7 Clinical Trial – the natural history study is here!

Author : Gina Hann Date : February 6, 2019 Comment : No Comments

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

Category : Blog batten disease, clinical trial, cln5, cln7, natural history study, UT Southwestern Read More

Top five tips I’ve learned as a rare disease parent – Tip #2

Author : Gina Hann Date : July 30, 2018 Comment : No Comments

Welcome to Tip #2 as a new rare disease parent – time to build your “A-TEAM”…

Category : Blog batten disease, Childrens Health, cln7, gene therapy, UT Southwestern Read More

Top five tips I’ve learned as a rare disease parent – Tip #1

Author : Gina Hann Date : July 26, 2018 Comment : No Comments

Welcome to being a rare disease parent. I haven’t been here that long, but I have learned a few pointers so far…

Category : Blog batten disease, BDSRA, cln7, gene therapy, Global Genes, NIH, NORD, Parenting, Rare Disease, Rare Disease DFW, Resources, UT Southwestern Read More

Fox News 4, Southlake, UTSouthwestern and Jojo together to fight against Batten

Author : Gina Hann Date : November 5, 2017 Comment : No Comments

Thank you FOX NEWS 4 Dallas for sharing our Batten Hope Story!

Category : Blog batten cln7, batten disease, cln7, dallas, ut southwestern gene therapy Read More

Batten Hope Radio Interview – Jeff Crilley Show

Author : Gina Hann Date : August 24, 2017 Comment : No Comments

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!

Category : Blog, Media batten disease, clinical trial, gene therapy, UTSW Read More

Make a secure, tax deductible donation to give Joseph Hann and other children with rare Batten disease hope.

100% of your dollars go toward the research, and we cannot accomplish the $1.2M clinical trial at UT Southwestern and Children’s Health in Dallas without your support.

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