Beyond Batten Disease Foundation of Texas and Brain Canada Launch New Partnership to Expand Network of Researchers Internationally

Austin, Texas– Beyond Batten Disease Foundation (BBDF) and Brain Canada are pleased to announce a new partnership that will hire researchers in Canada to investigate, explore and find a cure for juvenile Batten disease.

The research project is for $1.5 million over three years. The goal is to further grow the network of international researchers working to find a cure for juvenile Batten Disease. The deadline to submit a letter of intent is February 9, 2015.

“We are pleased to expand our fight against juvenile Batten disease to experts in Canada to transform juvenile Batten disease research and accelerate our timeline to a cure,” said Danielle M. Kerkovich, PhD, BBDF Principal Scientist.

Juvenile Batten disease is one disorder in a group of rare, fatal, inherited disorders known as Batten disease. Over 40 different errors (mutations) in the CLN3 segment of DNA (gene) have been attributed to juvenile Batten disease. Juvenile Batten develops at ages 6-8 when children begin to lose their vision, followed by personality changes, behavioral problems and slowed learning. These symptoms are followed by a progressive loss of motor functions, eventually resulting in wheelchair use and premature death.

Emerging evidence shows overlap between juvenile Batten disease and other neurodegenerative diseases such as Parkinson’s, Alzheimer’s and ALS (Lou Gehrig’s Disease), highlighting both the need and comprehensive value in studying juvenile Batten disease.

Charlotte and Craig Benson established Beyond Batten Disease Foundation in 2008 after their then five-year-old daughter, Christiane, was diagnosed with juvenile Batten disease. Together with hundreds of families affected by Batten disease, and many more supporters who share their hope and resolve, they are working tirelessly to create a brighter future for Christiane, and all children with Batten disease.

This initiative will reward “outside the box” ideas that are truly innovative and may challenge standard paradigms. BBDF has also established innovative partnerships with the New York Stem Cell Foundation (NYSCF). Building on the BBDF and NYSCF partnership to create induced pluripotent stem (iPS) cells in juvenile Batten disease, researchers will have access to the largest and first genetically diverse collection of iPs cells in juvenile Batten diseases, giving investigators the chance to watch disease progress in affected cells.

Link to application:

About Beyond Batten Disease Foundation
Beyond Batten Disease Foundation works to cure and prevent juvenile Batten disease, a rare, inherited neurological disorder that strikes young children, first causing vision loss and seizures, then cognitive and motor impairment, and ultimately death by the late teens or 20s. The foundation raises funds for research and is leading development of an easy and inexpensive, groundbreaking blood test to detect the gene mutations that cause juvenile Batten disease as well as 750-plus, other rare but serious and often fatal childhood ailments. For more information,

About Brain Canada
Brain Canada is a national non-profit organization headquartered in Montreal, Quebec, that enables and supports excellent, innovative, paradigm-changing brain research in Canada. For more than one decade, Brain Canada has made the case for the brain as a single, complex system with commonalities across the range of neurological disorders, mental illnesses and addictions, brain and spinal cord injuries. Looking at the brain as one system has underscored the need for increased collaboration across disciplines and institutions, and a smarter way to invest in brain research that is focused on outcomes that will benefit patients and families. For more information, visit