The Batten Disease Support & Research Association (BDSRA) hosted its 22nd Annual Conference in Chicago, Ill. from July 29 to August 1. The conference was attended by families as well as prominent researchers and clinicians in the field.

Each year, BDSRA hosts a conference for families of children with Batten disease, including siblings, grandparents and affected children. The gathering is the primary opportunity for families affected by Batten disease to connect with each other. It also includes educational sessions led by medical experts, classes on the support programs and services provided by BDSRA and talks by researchers who are actively engaged in the search for a cure for Batten disease. Some of the speakers featured during the research session were Pascale Tiger, PhD, of BioMarin, Sandra L. Hofmann, MD, PhD and Mark Sands, PhD, whose work focuses on infantile Batten disease, and Colleen Stein, PhD, whose work focuses on late infantile Batten disease. Danilo A. Tagle of the National Institute of Neurological Disorders and Stroke (NINDS) also spoke.

Laura King Edwards, president, attended the conference on behalf of Taylor’s Tale. Throughout the weekend, she met with prominent Batten disease researchers and networked with families. During a banquet on Saturday evening, Edwards presented a check in support of a research project led by Sandra L. Hofmann, MD, PhD, of the University of Texas Southwestern Medical Center and Jonathan D. Cooper, PhD, of the Institute of Psychiatry, King’s College, London. The funds committed total approximately $80,000, with half of the amount to be awarded pending a six-month progress update in February 2011.  

Next year’s conference will be held in Minnesota, and the 2012 event will be held in Charlotte, N.C., where Taylor’s Tale is based. To learn more about BDSRA, click here.