The Hann family
When fun and vibrantbrfive-year-old Joseph Hann was diagnosed with Batten disease, a terminal and degenerative brain disease, in March, his family startedbrJoseph's Foundation for Batten Hope to fundbrresearch for Joseph's form of the disease and to bring hope to others whobrreceive a similar diagnosis.
At the point of Joseph's diagnosis, hisbrform of Batten had no clinical trial, and no funded research focused on findingbra treatment. The progression of the disease is fast-paced, and is a combinationbrof blindness, epilepsy, Parkinson's and Alzheimer's. Joseph's parents were toldbrto make end-of-life plans for Joseph, and that there was no hope to help him.
They thought otherwise.
Through Joseph'sbrFoundation for Batten Hope, they initiated a fund at Dallas Foundation to helpbrserve the vision of gene therapy at UTSW, under the guidance of Dr. BergebrMinassian, Chief of Pediatric Neurology. As a family, they have dedicated themselvesbrto helping other children with forms of neuro-degenerative diseases likebrJoseph's to become their own advocates for gene therapy through thisbrprogram.
Their hope? Thatbrothers will be able to work toward realizing treatment in time for theirbrchildren, and to have the same chance at treatment that is possible forbrJoseph.
The Southlake communitybrcan help realize a treatment for Joseph and for many children in the future.brJoin Team Batten Hope Southlake to help fund the gene therapy work at UTSW andbrchildren's hospitals in Dallas.
The Hann family hopes to raise $1.2 million for a new clinical trialbrto give children like Joseph the chance to stop their disease, andbrto deliver hope to families confronted with similar diagnoses.
Click here to become abrFriend of Joseph and to join Team Batten Hope Southlake. Stay tuned for detailsbron an upcoming fundraising gala in Southlake this November.