363 full
Guest Researcher
Member since: 02/07


Male, 48 years
Glasgow, Strathclyde

Graham Steel
Patient Advocate
Advocacy, and Research
See less

About steelgraham

Graham now has over fifteen years experience of obtaining and sharing information between researchers and patients. "The patient as always, remains at the forefront - always will".

Graham Steel (47) is a native of Glasgow, Scotland. Graham's brother, Richard, was diagnosed with variant Creutzfeldt-Jakob Disease (vCJD) in April 1999 and died in November 1999 at the age of 33.

Graham joined the committee of the Human BSE Foundation on a voluntary basis in September 2001 and became a Trustee as of 2003 after the Foundation became a Charity.  Since September 2001, he acted as Vice-Chair.  One of his main initial and continued foci had been to develop and maintain the Foundation's website. Graham left this organisation in October 2005.

During that time, Graham devoted much time learning more of the background of TSE's and so called Prion disease, the current and emerging rationale of treatment issues/early diagnostic methodologies and maintaining/seeking contact with many researchers in several Continents. He also devoted much time assisting in forging links between a number of CJD related support groups from around the world.

Together with fellow co-founder Mr Don Simms, in late 2005, Graham set up the CJD Alliance, an internet based "information shed" in CJD terms.

As of July 2006, Graham was elected as Information Resource Manager for the newly formed CJD International Support Alliance (CJDISA). Graham was one the founding members of the CJDISA.

Graham further broadened his interests into topics and fields such as ALS/MND, MS, Open Access, Glycobiology, Neuroscience, Open Science, Open Data, and enjoys regular contact with many ‘Patient Advocates' from a broad spectrum, namely (but not only) those in Neurological fields.

He also acts in (unpaid) advisory capacities to the Open Knowledge Foundation, the Public Library of Science (PLOS) and most recently, Digital Science.

As of January 2015 to August 2016, he acted as Community (now Social Media) Manager for ContentMine.

In his spare time, Graham enjoys blogging (here and here) and being creative in multimedia audio/visual/soundtrack writing work following his previous 20 year stint as a part-time semi-professional producer/song-writer/singer/keyboard player.

Last updated - June 2017


Advocacy, and Research


Comments: 0 updates, 1 for others
Member since: Feb 07, 2007
Last Login Jun 07, 2017