BBDF Blog

Austin, TX – July 15, 2015 – Beyond Batten Disease Foundation (BBDF) is pleased to announce Craig Benson’s appointment to the Jan and Dan Duncan Neurological Research Institute (NRI) International Advisory Board. Consistent with BBDF’s strategy and goals to connect our research with top-ranked institutions, Craig is eager to join the NRI in its mission.

The NRI at Texas Children’s Hospital aims to reduce the temporal and conceptual gap between initial gene discovery and clinical applications by providing the context, core services, and community to support interdisciplinary collaborations between physicians, scientists, and patients. Designed to advance the understanding of neurological disorders, such as Batten disease, through basic and translational research and ultimately mitigate the impact of these devastating disorders on human life, the NRI has been integral in BBDF’s success.

Austin, Texas – June 9, 2015 – Beyond Batten Disease Foundation (BBDF) announces groundbreaking research published in Nature Cell Biology. The lysosome biology research is leading the way to a cure for juvenile Batten Disease.

“We think this research is our strongest candidate for therapeutic development for juvenile Batten Disease and understanding lysosome biology is the way to find a cure for this devastating disease,” said Danielle M. Kerkovich, PhD, BBDF Principal Scientist.

Austin, Texas – May 12, 2015 – Beyond Batten Disease Foundation has become a participating organization of The Research Acceleration and Innovation Network (TRAIN), a program of FasterCures, bringing the total number of venture philanthropies in TRAIN to 80.

FasterCures established TRAIN in 2005 to connect innovators in the disease research space with the vital resources, tools and relationships to catalyze development of new therapies and cures. Through the network, innovation in one disease area is translated to another in order to achieve treatment breakthroughs for all.

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

Austin, Texas – Beyond Batten Disease Foundation (BBDF) and the New York Academy of Sciences (NYAS) are working together in a new and innovative way to find a cure for a rare disease. While diseases like cancer and Alzheimer’s are widely known, rare diseases like juvenile Batten lack the attention and resulting funds needed to research, develop, and implement treatments. Juvenile Batten even lacks awareness among the medical and research community itself.

To raise awareness among research thought leaders and focus their collective energies on a key topic in juvenile Batten disease research, BBDF Principal Scientist, Danielle Kerkovich, PhD, proposed a unique think-tank of top experts from the Parkinson’s, Alzheimer’s, cancer and Lysosomal Storage Diseases (LSDs) fields to focus on our common drug target—a cell’s lysosome. Lysosomes are the recycling centers of the cell playing vital roles in the removal of cellular waste and keeping critical cell systems in balance. In diseases like juvenile Batten, other LSDs and adult forms of neurodegeneration, lysosome dysfunction compromises multiple cell systems eventually resulting in cell death.

WASHINGTON, DC – March 24, 2015 – Today Genetic Alliance announced the fifteen awardees for Phase I of its initiative to create a ‘white label’ of the Platform for Engaging Everyone Responsibly (PEER). PEER enables individuals to share health information with researchers and each other on their own terms to advance an understanding of health and disease, and to accelerate the development of cohorts for clinical trials. The fifteen selected awardees will work with Genetic Alliance to develop and refine the ‘white label’ PEER while engaging their communities.

Beyond Batten Disease Foundation (BBDF) was one of the fifteen selected awardees. BBDF plans to establish a functional network of existing and emerging Batten registries. Integrating existing registries to standardize and maximize data will provide academic investigators, clinician scientists, Pharma and clinical trialists a critical mass of informative data, accelerate the path to clinical trials, stimulate new research leading to new scientific insights, and provide a platform for patients and families to share their experiences, concerns and wishes.