Petition Closed
Petitioning United States Senator for California Dianne Feinstein and 4 others
This petition will be delivered to:
United States Senator for California
Dianne Feinstein
United States Senator for California
Barbara Boxer
California State House
California State Senate
California Governor

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


Letter to
United States Senator for California Dianne Feinstein
United States Senator for California Barbara Boxer
California State House
and 2 others
California State Senate
California Governor
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 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