Batten Disease Support and Research Association Conference To Attract Hundreds From Around the World

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Families affected by Batten disease, researchers, health care providers and advocates will meet in St. Louis

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The diagnosis of Batten disease is devastating for parents to hear. Understandably, family members often feel overwhelmed, lost and alone, and desperate to access information. That’s where our organization and the annual family conference steps in.

“Show Me A Cure,” the Batten Disease Support and Research Association’s (BDSRA) annual family conference, will be held July 14-17 in St. Louis, Mo. More than 400 people are expected to attend, including those affected by the terminal childhood disease, their families and loved ones, researchers, health care providers, and advocates. The conference is designed to offer support to the families of those suffering with Batten, provide the latest information about current research and potential treatments, and serve as a respite from the toll this disease takes on those living with it and their loved ones.

Batten Disease is considered an “ultra rare” illness that is always fatal. It’s one of approximately 50 conditions known as lysosomal storage disorder (LSD), meaning that genetic mutations disrupt the cells’ ability to dispose of wastes. Because of these damaged cells, children with Batten disease suffer progressive neurological impairment, which includes seizures, eventual blindness, personality changes, dementia, the ability to walk and talk and very shortened life span. Presently, there is no cure.

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.

“The diagnosis of Batten disease is devastating for parents to hear,” explained Dr. Margie Frazier, BDSRA’s Executive Director. “Understandably, family members often feel overwhelmed, lost and alone, and desperate to access information. That’s where our organization and the annual family conference steps in. “

The family conference offers four days filled with activities and sessions designed to support families living with Batten. “Batten Kids Care” provides onsite healthcare with attending nurses so that family members can take advantage of the wide variety of programming offered. Sessions such as Batten Research Overview and Clinical Trial Updates and Symptoms Management, feature Batten medical experts, researchers and industry science professionals who share the latest information. The conference agenda also includes guided sessions for difficult subjects such as bereavement and dealing with a new diagnosis. Special programming is available for the siblings of Batten sufferers. The “Sibs Agenda” includes trips to the St. Louis’ City Museum and Grant Farms, a Kid’s Parade and Dance Party with their affected brothers and sisters, and a River City Rascals baseball game for the entire family. The last day of the conference features A Service of Remembrance to honor the memories of loved ones lost to Batten disease. The entire conference agenda can be viewed and downloaded at http://bdsra.org/bdsra-conference/.

The conference is being held at the Renaissance St. Louis Airport Hotel. Numerous Batten families have agreed to share their personal stories with the media in order to raise awareness. To schedule an interview with a family and BDSRA principals, please contact Leslie(at)TeamFleisher(dot)com.

Tweet This: @BDSRA family conference July 14-17 to provide support, research & resources for families dealing w #BattenDisease. http://ow.ly/XowF3021rsy

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Marcy Fleisher
@BDSRA
since: 08/2009
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