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May 1996 – Patricia Wood visits Dr. Susan Hayflick at the Oregon Health & Science University. Hayflick is studying Hallervorden-Spatz Syndrome (name of disease at that time). They decide to collaborate on starting a non-profit for the disease to unite families and raise money for research to help find a cure. 

Sept. 23, 1996 – Non-profit status granted to organization in February 1997 and made retroactive to September. Name of organization is Hallervorden-Spatz Syndrome Association (HSSA). It has two board members: Wood, president and treasurer; Susan Laupola, secretary. 

May1998 – First newsletter published with a mailing list of 75. Networking Program starts with five families. 

August 1998 – Three new board members join: Gayle McMahon, treasurer; and trustees Mary Ann Roser and Dianne Gray. 

February 1999 – Web site created. 

July 1999 – Debbie Forstall joins board. 

January 2000 – Research Fund created. 

May 2000 – First Scientific Workshop on HSS held in Bethesda, Md., with 30 international researchers. 

May 2000 – First International HSSA Family Conference overlaps in Bethesda, Md., with 23 families (18 affected individuals) from four countries. Families and researchers meet together at the end of the Scientific Workshop to exchange information and ideas. It was the first time many of the researchers had ever met an individual with the disease, and the first time most families affected by the disease had met another family like them. 

August 2001 – Discovery of PANK2 gene announced. It affects about half of NBIA individuals and causes a form of the disorder called Pantothenate Kinase-Associated Neurodegeneration (PKAN). 

October 2001 – Kris McGourthy and Mary Tapke join board of trustees. 

December 2001 - $85,000 in Research Fund, raised by families during the year. 

May 2002 – Second HSSA International Family Conference held in Indianapolis, Ind., with 23 families from five countries. An international family is inspired to return to Germany and starts a sister non-profit. 

August 2002 – Family fundraisers net $60,000 for Research Fund. 

September 2002 – Three $30,000 research grants awarded by the National Organization for Rare Disorders for NBIA research with funds from HSSA. 

January 2003 – Name for disease changed to Neurodegeneration with Brain Iron Accumulation and name of organization changed to NBIA Disorders Association. Change is to disassociate from Hallervorden and Spatz, two German doctors notorious for their activities during World War II. New tag line also created for organization: From discovery to cure. Newsletter mailing list now at 2,000. 

September 2003 – NORD awards two more $30,000 research grants with funds from NBIA Disorders Association. 

October 2003 – Family fundraiser nets $23,000 for the Research Fund plus association lands a $50,000 grant to fund BioBank membership. 

November 2003 – Family fundraiser nets $10,000 for Research Fund. 

December 2003 – Listserv started. 

May 2004 –  Board members Dianne Gray, Debbie Forstall and Gayle McMahon end terms. Gerry Barbiero, Jeff Doerner and Phil West sign on. 

September 2004 – One $30,000 research grant awarded by NORD for NBIA research with funds from NBIA Disorders Association. 

October 2004 – German NBIA non-profit donates $10,000 to Research Fund. 

May 2005 – New Scientific & Medical Advisory Board created with seven members, making it possible for the association to award research grants without using NORD, thus saving administrative costs of $5,000 per grant.

May 2005 – Third International NBIA Disorders Association Family Conference held in Gaithersburg, Md., with 23 families from seven countries.

May 2005 – Second Scientific Workshop on NBIA held in Gaithersburg, Md., simultaneously with 40 researchers from around the world.

August to October 2005 – Family fundraisers contribute $20,000 to the Research Fund.

September 2005 – One $30,000 research grant awarded by NORD for NBIA research with funds from NBIA Disorders Association. Future awards will be made with assistance from new advisory board.

March 2006  – Lisa Shook joins Board of Trustees.