The Myelin Project USA's main objectives are to:
Fund scientific and clinical research
Give financial assistance to low income families
Raise awareness and education of ALD
Legislate and advocacy for Newborn Screening legislation
Adrenoleukodystrophy is a devastating genetic disease that can be treated and stopped if it is caught before physical symptoms show. Unfortunately, the rare disease is not well known in the medical community and the symptoms are commonly misdiagnosed. When proper diagnosis is finally reached it can be too late to save the affected child. This tragic result can be prevented if the affected individual and their doctors know they have the disease and can obtain lifesaving treatments early enough. We believe testing for ALD in newborns is the most effective way to do this.
California Assembly Bill 1559 is a bill to enact newborn screening for Adrenoleukodystrophy (ALD) in CA was sponsored by The Myelin Project to ensure children born in California are screened, diagnosed and treated for this terminal genetic disease. On September 25th, 2014 in Sacramento, CA, Governor Jerry Brown signed our bill into law making California the fourth state in the USA to pass legislation to screen newborns for ALD. Click here to read our press release. Newborn Screening identifies conditions that can affect a child's long-term health or survival. Early detection, diagnosis, and intervention can prevent death or disability and enable children to reach their full potential.
Please watch the informative and moving video below for more information.