BBDF Blog

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.

THE WOODLANDS, TEXAS – Feb. 28. – Where there is a Will, there is a way! Meet the inspirational Will Herndon and his mother Missy at the Woodlands Marathon Saturday, February 28, 2015. Will’s Warriors will run on World Rare Disease Day to support Will, who is fighting a rare disease.

Six years ago, Will and his family received a devastating diagnosis. Will, a loving, bright, energetic 6-year-old, has juvenile Batten disease—a rare, genetic, neurodegenerative disorder. Batten disease attacks an initially healthy child and causes vision loss, loss of cognitive skills, and seizures. Progressively, children suffer loss of memory and speech until they are mentally and physically incapacitated, eventually leaving them wheelchair bound, and then bedridden. With no current treatment or cure, Batten disease is always fatal, often by the late teens or early twenties. Will, now 12, is blind. His family is heart-broken but driven to find a cure.

Austin, Texas– February 4, 2015 – Beyond Batten Disease Foundation (BBDF) https://beyondbatten.org and Brain Canada http://braincanada.ca 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.

The Battle is Personal for a Texas Father Who is Trying to Save His Own Daughter’s Life

New York City, New York – November 17, 2014 – Beyond Batten Disease Foundation (BBDF) and the New York Stem Cell Foundation (NYSCF) have been selected as a national innovator by the Milken Institute and will present their breakthrough findings about juvenile Batten disease at the 6^th annual Partnering for Cures, November 16-18 in New York City.

Craig and Charlotte Benson established Beyond Batten Disease Foundation in August 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.