June 30, 2018

Didi Jackson | In Memoriam 

Dystonia Europe announces, with great sadness, the passing of our former President, Didi Jackson on 14 February, 2018. 

The 1980s and early 1990s were the early days of dystonia becoming better-understood by the medical profession, and it was very difficult for patients to obtain good information and medical advice.  Didi received her own diagnosis and treatment from a doctor in the United States in 1989, and decided that she would create an organisation in Germany to improve the situation for dysphonia patients.  This was Selbsthilfe-Gruppe Dysphonie, based at her home in Hamburg. 



By 1993, Didi had realised the broader understanding of dystonia as a syndrome with different presentations of symptoms, and changed the format of her group to become the Deutsche Dystonie Geselleschaft (DDG).   DDG joined the European Dystonia Federation (EDF) at its founding meeting in Spoleto, Italy, in June that same year.   

Didi joined the EDF Board in 1995 and was appointed Treasurer in 1997.  In 1999 she became Vice President and served as President from 2001 until 2007.  On her retirement, she was elected as an Honorary Member of our organisation. 

Didi worked tirelessly to help dystonia patients over all these years and was a fine advocate for dystonia patients.   

There were many highlights during her presidency.  Particularly, the introduction of the David Marsden Award for young dystonia scientists and EDF’s 10th Anniversary – both in 2003, and the preparations for EDF’s scientific conference on dystonia in Hamburg, 2008.   This was a great success, attended by 250 dystonia specialists from across the world, and was a real innovation as it was organised by a patient group.   

Didi Jackson fulfilled her duties as our President with much hard work, but also with grace and dignity and we are grateful for all that she contributed to our success over those years of service.   

Barry, her husband of many years, predeceased her in 2017 and she is survived by her two sons, Lenard and Dennis and their families, to whom we offer our sincere condolences. 

Written by:

Alistair Newton
Honorary Member
Dystonia Europe