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When you shop at The Menagerie through the end of May, mention Beyond Batten and a minimum of 10% of your purchase will be donated to the Foundation! 

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Learn more about Beyond Batten
 
PROMISING RESEARCH BREAKTHROUGH
Beyond Batten Disease Foundation has partnered with a private donor to provide a $2.5 million grant to the Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital to support a promising research breakthrough made by a team based in Italy, led by Dr. Andrea Ballabio. Dr. Ballabio's group identified a "master gene" that controls how cells function. In individuals with Batten disease, a part of their cells called the lysosome, which is responsible for breaking-down unwanted material, malfunctions. This unwanted material then accumulates, eventually causing cells to die. By finding the gene that controls the lysosome, Dr. Ballabio's discovery has created an entirely new avenue of research. The research team is now working to develop potential treatments that will "turn on" the ability of diseased cells to function normally. 
 
Learn more about other research for Batten disease...
UPDATE ON CARRIER SCREENING TEST  

The National Center for Genome Resources (NCGR) has completed the feasibility and technology assessment for the carrier screening test and selected a suitable technology platform. They have also conducted three successful proof-of-concept experiments to confirm that the chosen technology will work. They are now working to expand the number of diseases in the test panel to around 400, and are conducting validation testing on approximately 1,000 DNA samples. Pre-commercialization activities, including site selection for a clinical laboratory, are underway, and the test is on schedule to roll out in early 2010.  
 
Learn more about the carrier screening test and how it can prevent Batten disease and other rare diseases...