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  All historical references to HSSA and HSS were left as is, so you will see these terms used throughout the site for articles and information gathered prior to 2003.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.
   

Brain, Blood and Iron:

Joint International Symposium on Neuroacanthocytosis

and

  Neurodegeneration with Brain Iron Accumulation

  October 1-2, 2010

Doubletree Hotel

Bethesda, MD
 

You are invited to join us for this symposium focusing on the basic science of cell degeneration with special attention to autophagy.

 

We will also be examining the role of mitochondria, iron accumulation, membrane trafficking, and CoA metabolism in neurodegeneration. Biomedical research roadmaps for NA and NBIA will be developed.

 

For a full description of the symposium program, see the home page of the website for the Advocacy for Neuroacanthocytosis Patients at www.naadvocacy.org.

 

Contact Patty Wood at pwood@NBIAdisorders if you are interested in attending any part of the symposium.
  


"Click" to view article

 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
 
In 2007 Prof. Dr. Lars Timmerman and Dr. Amande Pauls received a seed grant from our sister organization in Germany, Hoffnungsbaum e.V., funding a retrospective study looking at NBIA patients who underwent DBS around the world, and were able to show that DBS on average improves dystonia in NBIA patients. The retrospective study was recently published in BRAIN, a top ranking international journal in clinical neurology. A free download of the paper is available at http://brain.oxfordjournals.org/cgi/content/full/awq022v1.
 
 
Pepsi Grant - On the last day of each month we will be applying for a grant thru the www.RefreshEverything.com site under the Health category. The first 1000 applications are accepted for the following month and it is a race to get thru, but we will continue trying. Please check back on the first of each month to see if we have been successful. Once we are accepted, you will be able to vote once a day for NBIA Disorders Association in an effort to win a $250,000 grant. Our proposal is titled "Hope for Miracles: Support for research to cure rare disorders."
   
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.

NBIA Miracle Video

 
  

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
 
  

Funds collected through June 16, 2010

 
  
  
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 July 15, 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