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How NBIA Disorders Association Began
August 2006

Where it all began  

In 1991, Dr. Susan Hayflick had just finished a genetics fellowship and was certified as a clinical, molecular and biochemical geneticist, as well as a pediatrician. She was asked to meet with David and Mary Miller and their children at Childrens Hospital in Buffalo, N.Y.  Nothing would ever quite be the same for Hayflick, the Millers or families like them. 

What happened that day, the day Hayflick was asked to confirm a pediatric neurologist's finding of Hallervorden-Spatz disease in three of the Miller's four children, began a 15-year odyssey that continues to this day. Hallervorden-Spatz, which is now called NBIA, or Neurodegeneration with Brain Iron Accumulation, has become a passion for Hayflick, thanks in no small part to her meeting that day with the Millers. It is a passion that has resulted in ongoing research into the disease, the discovery of NBIA-related genes and the inspiration for me to found an NBIA education and research-oriented non-profit. 

After meeting David and Mary Miller, "I was very taken with the human side of the disease," Hayflick said. "The Miller family was so generous with their time and their hearts. I felt myself really wanting to help them." 

Hayflick was living in Buffalo at the time and visited the Amish community where the Millers live. The Millers and their neighbors invited her into their homes and allowed her to collect blood samples to begin her research into the disease. Besides David and Mary Miller's three daughters, there were two other families with affected children, for a total of seven with the disease in that small community. 

Hayflick recalled sitting at her desk and figuring out the odds to find the gene for this disease using the DNA of the Miller parents and their four children. She determined that their DNA alone could unlock the secret of the NBIA gene and thus began her search. 

Hayflick was in Buffalo for 1½ years before moving her laboratory to the Oregon Health & Science University in 1993. She put out the word to pediatric neurologists that she was studying this rare disease, and more samples slowly trickled in. After the non-profit was created 10 years ago, more parents learned of her work and donated their blood samples leading to the finding of the first NBIA gene in 2001 and now the second more recently. 

Hayflick has never forgotten that it was the Miller family who inspired her all those years ago.

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by Patricia V. Wood, President
January, 2003
 
Welcome to the Web site for the NBIA Disorders Association. I hope you will find it useful. First a little bit about me. My daughter, Kimberly, 16, was diagnosed with HSS at the Mayo Clinic in 1989. They told me there was nothing to do but take her home to die within 10 years. Then in 1996, I heard there was a doctor researching HSS. I decided to start HSSA after meeting Dr. Susan Hayflick of Oregon Health & Science University in May, 1996, as a way to help further research into this disease.
 
The application for non-profit status was approved in February, 1997, and made retroactive to September, 1996. I spent most of 1997 selling my share of a business, so that I could have the time to devote to HSSA. In December, 1997, my new "career" began in earnest. The first order of business was to create a brochure explaining the reasons for founding HSSA and describing the organization's goals: To raise research funds to find the gene responsible for HSS; provide emotional support to HSS families; educate the public and monitor the research.
 
The next order of business was a newsletter. The first issue went out in May, 1998, and we are now publishing three times per year. Please be sure and send your name and address to me at pwood@NBIAdisorders.org if you would like to be added to the mailing list.
 
The Networking Program for families to share experiences and support began in 1998 with five families. As we begin 2003, we have sixty-five families participating, with new families joining every month.
 
HSSA held its first International Family Conference in May, 2000. Twenty-three HSS families from four countries came together in Bethesda, Maryland. At the same time, thirty-five researchers from seven countries met at the First Scientific Workshop on HSS. These two events were milestones for HSSA. Then in May, 2002, we held our second family conference in Indianapolis, Indiana. We had twenty-four families from five countries participate. We plan to hold our next family conference in 2004.
 
Through fundraising efforts, the HSSA Research Fund, in cooperation with the National Organization for Rare Disorders, awarded its first three research grants in 2002. NORD is currently accepting Requests for Proposals for two additional grants available in 2003.
 
Now in 2003, we have changed our name of the organization from HSSA to NBIA Disorders Association. This is a reflection of the exciting new discoveries being made in research and the growing base of knowledge we now have.  We have grown from a tiny start-up organization just a few years ago to one maturing through hard work, a willingness to learn and an increasing ability to make things happen. I hope many of you will decide to join in and lend us your talents so we can continue to grow. We truly are on our way - from discovery to cure.

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