PR.com: Business Directory, Press Releases, Jobs, Products, Services, Articles
 
Businesses Articles Press Releases Follow @PRcom
Press Release Pricing | News by Category | News by Country | News by US Region | Recent News | PR.com News on Your Site
 

Press Releases

 

The Myelin Project

Press Release

Share      Blog

Receive press releases from The Myelin Project: By Email PDF Version RSS Feeds:
Governor Jerry Brown Signs Bill to Screen Newborns for Terminal Disease

Governor Jerry Brown signed Assembly Bill 1559 into law today which will implement newborn screening in the state for a deadly genetic disease called adrenoleukodystrophy (ALD) that affects approximately 1- 15,000 children.

Governor Jerry Brown Signs Bill to Screen Newborns for Terminal Disease
Sacramento, CA, September 27, 2014 --(PR.com)-- Governor Jerry Brown signed Assembly Bill 1559 into law today which will implement newborn screening in the state for a deadly genetic disease called adrenoleukodystrophy (ALD) that affects approximately 1- 15,000 children. Evidence suggests that newborn screening can save lives and drastically reduce long-term private and public healthcare costs. AB 1559 was sponsored by CA based non-profit The Myelin Project and authored by State Assemblyman and Pediatrician Dr. Richard Pan. It received unanimous bipartisan support in both the state Assembly and Senate.

If left undiagnosed and untreated, ALD can cause severe brain injury accompanied by a progression to a vegetative state, and eventual death in most cases before the age of 8 years old. Bone marrow transplantation has been proven to stop disease progression, however, it is only effective when performed before the onset of disease symptoms.

The grass roots campaign was led by three mothers and advocates affected by ALD, two of whom have lost children to the disease: Patti Chapman of The Myelin Project, Gina Cousineau of Be a Hero Become a Donor Foundation, and Janis Sherwood of Fight ALD. They were backed by several other non-profits, medical institutions, doctors, researchers, and ALD specialists throughout the country. Jeremy Hill Jr., a Bakersfield teenager affected by ALD who received a successful bone marrow transplant, spoke in front of the Senate Health Committee Hearing receiving an emotional standing ovation.

New York Governor Andrew Cuomo signed similar legislation for ALD newborn screening last year in his state, and as a result, children are being diagnosed and effectively treated. Being the largest state in the nation with the most annual births, screening in CA will mean accurate ALD diagnoses, timely and effective treatment, and informed genetic counseling for a large population.

ALD gained temporary fame in the early 90s as a result of the critically acclaimed 1992 film “Lorenzo’s Oil” directed by George Miller documenting one family’s fight to save their son’s life by inventing their own treatment still in use today. For more information please contact: The Myelin Project at info@myelin.org | www.myelin.org | P.O. Box 39 | Pacific Palisades, CA | 90272 | USA.
Contact Information
The Myelin Project
Greg Benton
310-795-1275
Contact
www.myelin.org
Attached Files
Governor Jerry Brown Signs Bill to Screen Newborns for Terminal Disease
Filename: PressReleaseAB1559_09252014.pdf

Click here to view the list of recent Press Releases from The Myelin Project
Promote Your Business