Join Team Batten Hope Southlake in Finding a Cure for Batten Disease
Sep 21, 2017 09:20AM
● By Audrey Sellers
The Hann family
When fun and vibrant five-year-old Joseph Hann was diagnosed with Batten disease, a terminal and degenerative brain disease, in March, his family started Joseph’s Foundation for Batten Hope to fund research for Joseph’s form of the disease and to bring hope to others who receive a similar diagnosis.
At the point of Joseph’s diagnosis, his form of Batten had no clinical trial, and no funded research focused on finding a treatment. The progression of the disease is fast-paced, and is a combination of blindness, epilepsy, Parkinson’s and Alzheimer’s. Joseph’s parents were told to make end-of-life plans for Joseph, and that there was no hope to help him.
They thought otherwise.
Through Joseph’s Foundation for Batten Hope, they initiated a fund at Dallas Foundation to help serve the vision of gene therapy at UTSW, under the guidance of Dr. Berge Minassian, Chief of Pediatric Neurology. As a family, they have dedicated themselves to helping other children with forms of neuro-degenerative diseases like Joseph’s to become their own advocates for gene therapy through this program.
Their hope? That others will be able to work toward realizing treatment in time for their children, and to have the same chance at treatment that is possible for Joseph.
The Southlake community can help realize a treatment for Joseph and for many children in the future. Join Team Batten Hope Southlake to help fund the gene therapy work at UTSW and children’s hospitals in Dallas.
The Hann family hopes to raise $1.2 million for a new clinical trial to give children like Joseph the chance to stop their disease, and to deliver hope to families confronted with similar diagnoses.
Click here to become a Friend of Joseph and to join Team Batten Hope Southlake. Stay tuned for details on an upcoming fundraising gala in Southlake this November.
Learn more about Batten Hope here!