CHAPEL HILL, N.C. (WTVD) -- A father and mother in Chapel Hill are sharing their painful family story to raise awareness about a rare disease. It's a journey that began with unimaginable grief but led ...
Researchers find that an easy-to-measure brain process may be a target or biomarker in measuring treatment outcomes in clinical trials in Batten disease. Early symptoms can be subtle. A child's ...
Batten disease is a rare group of nervous system disorders that get worse over time. It's also called neuronal ceroid lipofuscinosis (NCLs) or ceroid lipofuscinosis, neuronal (CLN). It usually starts ...
The only drug that treats children with a rare degenerative disease called Batten disease could be withdrawn within the next few months if negotiations over its price fail. Batten disease, also known ...
Members of the editorial and news staff of the Los Angeles magazine and the Engine Vision Media Network were not involved in the creation of this content. The Gray Family--From L-R Gavin (3) Credit: ...
A girl with a deadly brain disease has been given a unique drug that was invented from scratch just for her and in a fraction of the normal time. Mila Makovec, now aged eight, was diagnosed with fatal ...
June 9th is International Batten Disease Awareness Day. It's an opportunity for those dealing with this horrific, ultrarare condition to share stories, spread awareness, and maybe spur on much-needed ...
Max started receiving treatment for CLN2 Batten disease as a one-year-old "To know that he will have that treatment now for the rest of his life is incredible, it's so reassuring." Emily's ...
A year ago, golf-course architect David Kahn and his wife Karen went public with every parent’s worst nightmare: their twin daughters Amelia and Makenzie are battling Batten disease, the cruelest ...
"When I'm willing to say, 'Thank you for...' suddenly I see the ugly become beautiful and I can make it another day," Bekah Bowman tells PEOPLE For Bekah and Danny Bowman of Orange County, California, ...
Batten disease is an inherited neurological disease that is often fatal. It usually develops during childhood, between the ages of 5 and 10 years. The earliest symptoms range from being fairly obvious ...
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