Rare Disease Report

BDSRA Sponsors NCL Boston 2016 (Batten Disease Conference)

OCTOBER 02, 2016

Researchers from around the world share findings on diagnosing, treating and combating the deadly disease

Columbus, Ohio (Oct. 3, 2016)The Batten Disease Support and Research Association (BDSRA) is proud to be a platinum sponsor of the Neuronal Ceroid Lipofuscinosis (NCL) 2016 research conference to be held in Boston October 5 - 8. Researchers from around the world, as well as families of those affected with the terminal disease, health care providers, and advocates, are expected to attend. The conference will promote awareness of the deadly disorder and provide critical information on the latest research being conducted to treat and combat it.

BDSRA joins pharmaceutical company Biomarin as primary sponsors. The two organizations are working closely with Massachusetts General Hospital, a teaching hospital and biomedical research facility at Harvard Medical School, to support the event.

Batten disease is not as well-known as more common conditions, yet takes a devastating toll on those afflicted with it, as well as their families and loved ones,” said Dr. Margie Frazier, BDSRA’s Executive Director. “That’s why conferences such as this are so important. They provide much-needed encouragement that the situation is not hopeless, and draw attention to the fact that a great deal of important, meaningful research is being conducted by dedicated professionals throughout the world. It provides a forum for researchers to share their findings, explore new ways of looking at the disease, and offer solutions to the challenges they face as they look to defeat it.”

Batten Disease is one of approximately 50 conditions known as lysosomal storage disorder (LSD), and is a genetic mutation that disrupts the cells’ ability to dispose of wastes. It is considered an “ultra rare” illness that is always fatal. Children with Batten disease suffer progressive neurological impairment, which includes seizures, eventual blindness, personality changes, dementia, the ability to walk and talk and a shortened life span.

The conference agenda and list of distinguished speakers at the NCL 2016 conference can be accessed at http://nclboston2016.com. For more information on BDSRA, please visit our web site at http://bdsra.org.

Tweet This: @BDSRA is proud to sponsor #NCLBoston2016 Oct. 5-8, critical to promote awareness & research to treat and combat Batten disease.


Parents desperately seeking to build a network for those diagnosed with Batten disease founded the Batten Disease Support and Research Association (BDSRA) in 1987. BDSRA is based in Columbus, Ohio, and is the largest support and research organization dedicated to Batten Disease in North America. Its mission is to fund research for treatments and cures, provide family support services, advance education, raise awareness, and advocate for legislative action. 

This article was made possible by a sponsorship from BioMarin Pharmaceutical Inc. Rare Disease Report has sole control over the editorial content.

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