Add Adrenoleukodystrophy (ALD) to Louisiana's New Born Screening Panel

ALD is a demyelination, non-curable, rare (1-17,000), fatal brain disease. It affects mainly boys ages 6-10. By the time the disease becomes symptomatic, it is generally too late to do anything for the child and they will die within 3 years. If caught in time, as with my son, a bone marrow/stem cells transplant (BMT) can be done and will halt the progression of the disease.

However, due to the extensive brain damage done to my son's brain due to late detection, during his transplants he lost most if his functions. Before transplant at age 8, my son was athletic, intelligent, and funny. Now he is deaf, blind, non-verbal, in diapers, a wheelchair, and has no cognitive thinking abilities. This is very common in boys after BMT.

If ALD were detected in New Born Screening, precautionary measures and actions would be taken. Regularly scheduled MRIs would be done and at the first sign of change in the brain and a BMT would be done to halt the disease preventing it from damaging the brain. These boys generally do well in life post transplant. Early detection is the difference between life and death with this disease.

The cost of the test is approximately $1.50-$3.00 per test. According to www.ALDLife.org there are 20 families in the state of Louisiana affected with ALD. 2 boys have been diagnosed in the last 3 years (that I know of) and cannot transplant and are going to die. Www.ALDConnect.org is another great resource. Please join me in pushing to have ALD added to the New Born Screening Panel in Louisiana.

https://picasaweb.google.com/118182521710740550894/AlexSALDJourney