Timeline

1980 – Adult Polyglucosan Body Disease (APBD) was first recognized as clinicopathologic entity.

1991 – Dr. Alexander Lossos, a neurologist at Hadassah University Hospital in Jerusalem, discovered that a deficiency of the glycogen branching enzyme (GBE) causes APBD.

1998 – Dr. Lossos identified the genetic mutation (Tyr329Ser) present in patients with APBD.

2005 – The Adult Polyglucosan Body Disease Research Foundation (APBDRF) was founded to improve the diagnosis and treatment of APBD, increase awareness of APBD among health professionals and the public, and support individuals and their families affected by the disease.

Early 2006 – APBDRF launched its website to reach those affected by APBD and the doctors who may be treating them.

August 2006 – APBDRF sponsored the first conference of internationally recognized medical professionals to discuss the state of research on APBD. The conference laid the groundwork for the coordination of future research on APBD.

2007 – APBDRF began to fund ongoing research in order to find a cure to APBD and is now responsible for the unique momentum of multi-center, international clinical and scientific efforts to solve the puzzle of APBD.

March 2007First Newsletter May 2007 – APBDRF’s Medical Advisory Board participated in the 59th Annual Academy of Neurology (AAN) Expo in Boston.

April 2008 – APBDRF’s Medical Advisory Board participated in the 60th Annual Academy of Neurology (AAN) Expo in Boston.

April 2010 – APBDRF holds its 5th Scientific/Medical Advisory Board meeting in Toronto.

November 2011 – APBDRF holds its 7th Medical Advisory Board meeting in New York.

June 2012 – APBDRF holds its 8th Medical Advisory Board meeting in New York.

June 2012 – New updated website goes live

January 2013 – First gene fully sequenced

March 2013 – 9th meeting

December 2013 – 10th meeting

April 2015 – 12th Annual APBDRF Scientific Advisory Board Meeting April 15, 2015 NYC. click here for abstracts