Formerly Hallervorden-Spatz Syndrome Association

Welcome to the NBIA Disorders Association Home page

created to provide families, physicians, and support providers with information about Neurodegeneration with Brain Iron Accumulation (NBIA) disorders.
 
As of January, 2003, our name changed from Hallervorden-Spatz Syndrome Association to NBIA Disorders Association.  All historical references to HSSA and HSS were left as is, so you will see these terms used throughout the site for articles and information gathered prior to 2003. All current references to the disease and our organization will reflect the new names.
 


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 Children's Hospital & Research Center Oakland

News For Referring Physicians                          November/December 2009

Brent Bonfiglio and Travis Brown came to Children’s Hospital Oakland with
a progressive neurodegenerative disease for which there is no known cure. But thanks to Brent’s mother and a Children’s clinical research team, they now have access to a new treatment option showing remarkable results.
  
NBIA Disorders Association Scientific and Medical Advisory Board (SMAB)
Position statement:  use of experimental drugs and other therapies, including deferiprone
  
Minnesota Bands Rock for NBIA! Fundraiser April 18, 2010.
"Click" here for more information.
  
New! Newsletter Archives Available
April 2003 - present
 

 
Hayflick Lab Campaign
  

Dr. Susan Hayflick (second from the right) with her research team.


Use this donation button to guarantee it is credited to the Hayflick Lab Campaign.

 
  

Dr. Susan Hayflick is considered the world expert on NBIA. Her lab at the Oregon Health & Science University was the first one 17 years ago dedicated to finding a cure for NBIA disorders. Her lab has been primarily responsible for the finding of two genes, in 2001 and 2006.

In the next few months, the doors to this lab are in danger of closing if we do not raise enough money to keep them open. NBIA Disorders Association has created the "Hayflick Lab Campaign" to prevent this disaster.

We are asking for your support. When one of the very few labs dedicated to researching and understanding the disease your loved one is affected with must shut its doors, it is truly tragic.

To maintain hope, we must retain this laboratory. To do this, we need to raise $250,000. This amount will allow the lab to remain functioning for the next two years. This then allows the opportunity for government funding to step back in, via NIH grants.

Please consider contributing to NBIA Disorders Association for the "Hayflick Lab Campaign." Your donation (no matter what size) is critical and greatly appreciated. We have to make our goal. It's our only hope.

"Click" here for more information about the Hayflick Lab Campaign.
 

 

  

Fox family from Raleigh, N.C. in the news for Hayflick Lab Campaign
Watch Video 

 

 
We use the services of PayPal so you can donate automatically from your checking account or credit card. You do not have to open a PayPal account. When donating through PayPal your transaction is secure and none of your personal financial account information is shared with NBIA Disorders Association.

Check us out on our Facebook Cause Page
You do not need to join Facebook to access this page
 

Check out BandsForACause.org
Mike Cohn's Web site raising funds for Hayflick Lab Campaign
 
  

 
  
  
NBIA Disorders Association
2082 Monaco Ct.
El Cajon, CA 92019-4235
Phone: (619) 588-2315
FAX:  (619) 588-4093
E-mail: info@NBIAdisorders.org
  
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Last updated on March 11, 2010
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If you have comments or suggestions, e-mail me, Patricia V. Wood, at pwood@NBIAdisorders.org   
Web site design & maintenance by Davida Strauss  davida99@cox.net