We are grateful to FOXCT’s Sarah Cody’s follow-up piece on newborn screening for ALD in CT. Hoping CT will be ready to test in a few months. If you don’t look for it you won’t find it until it’s too late. We advocates will be working on this until all states are testing. It shouldn’t …Read More
ALD Newborn Screening has been Approved for the Recommended Uniform Screening Panel!
On August 27th at a meeting of the Secretary of Health and Human Services’ Advisory Committee on Heritable Disorders in Newborns and Children in Rockville, Maryland, ALD newborn screening was approved for addition to the Recommended Uniform Screening Panel. This was the culmination of 3 years of work by researchers, practitioners and patient advocates. Approval …Read More
Join the Movement and #SaveTheBoys with Brian’s Hope
Every 36 hours, a newborn baby is born with adrenoleukodystrophy, also known as ALD. ALD is a genetic disease that attacks the brain and can cause blindness, deafness, loss of muscle control or even death. If detected early, ALD can be treated; however currently there is no mandatory screening for this disease. Join Brian’s Hope …Read More
Golf Tournament Benefiting Branford Lions Club & Brian’s Hope
The Branford Lions Club is pleased to announce that they have once again adopted Brian’s Hope in a Charitable Golf Event on June 4th. The Lions are very excited to be able to support Brian’s Hope in its mission to stop the progression of adrenoleukodystrophy (ALD). Proceeds from the event will be shared by both …Read More
Inauguration of The Moser Center at The Kennedy Krieger Institute
Jean and Brian recently traveled to Baltimore for the exciting inauguration of The Moser Center at The Kennedy Krieger Institute, an internationally recognized institution dedicated to improving the lives of individuals with disorders of the brain, spinal cord, and musculoskeletal system. The Moser Center for Leukodystrophies is named in honor of the late Dr. Hugo …Read More
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