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California State Senate: Add Newborn Screening for Adrenoleukodystrophy (ALD)

Adrenoleukodystrophy (ALD) is a terminal illness which took the life of 8 year old Cameron Ryan Marsh on November 14, 2012. It is a rare genetic brain disorder that only happens to 1 out of 17,000 little boys in between the ages of 4 and 8. Newborn screening for ALD is needed immediately.  

A newborn screening method has been developed at the Kennedy Krieger Institute that can detect elevated VLCFA in very small volumes of blood.

All states require newborn screening, however the number of conditions on a state's screening panel varies from state to state. Each state public health department decides both the number and types of conditions on its panel. 

This petition is looking to add testing for ALD to California's screening panel and eventually be adopted by all states. 

Adrenoleukodystrophy (X-ALD) is a deadly disease which affects the white matter of the brain and the adrenal glands. In the childhood form, early symptoms include hyperactivity, difficulty at school, difficulty understanding spoken material, deterioration of handwriting, crossed eyes (strabismus), and possibly seizures. As the disease progresses, further signs of damage to the white matter of the brain appear; they include changes in muscle tone, stiffness and contracture deformities, swallowing difficulties, and coma. Without a cure, this disease is a death sentence.

Cameron Ryan Marsh is a hero, along with all little boys and their families who have experienced this disease. This disease has no cure but early detection could prolong life and lead to treatments to aid in the quality of life.

Facts on X-ALD please see http://www.x-ald.nl/clinical-diagnosis/facts-on-x-linked-adrenoleukodystrophy/ 

Newborn Screening Saves Lives Act of 2007, intended to establish federal grant programs: http://www.govtrack.us/congress/bills/110/s1858

Newborn Screening developed by Kennedy Krieger Institute http://www.kennedykrieger.org/node/4900

History of newborn screening in the US: 

http://bioethics.georgetown.edu/pcbe/background/newborn_screening_crowe.html

http://www.thehastingscenter.org/publications/briefingbook/detail.aspx?id=2268

Newborn Screening by State: http://www.thehastingscenter.org/publications/briefingbook/detail.aspx?id=2268

General information, including cost: http://learn.genetics.utah.edu/content/health/ngs/

National Newborn Screening & Genetics Resource Center: http://genes-r-us.uthscsa.edu/%3Cfront%3E

This petition was delivered to:
  • United States Senator for California
    Dianne Feinstein
  • United States Senator for California
    Barbara Boxer
  • Senator
    Barbara Boxer


Erin Lynch started this petition with a single signature, and now has 954 supporters. Start a petition today to change something you care about.