The Pituitary Foundation faces an arduous fight against a former member who is calling for a governance overhaul after alleged data protection breaches and mistreatment claims.
Jon Danzig (pictured) told Civil Society that he is “not ready to give up” demanding an apology and rectification from the charity after two years of “what felt like a campaign against me”.
Danzig claims the Foundation has spread misleading information about him, and withheld documentary evidence relating to the row. Accordingly he has invoked the Data Protection Act and involved the Informational Commissioner’s Office in the dispute.
The conflict began in 2008 when Danzig, an acromegaly sufferer, started a discussion on the Foundation's website forum objecting to a doctor’s claim that people with acromegaly suffer very few symptoms. When he challenged the doctor’s view, and garnered strong support for his stance on the forum, he claims the whole discussion was removed by the charity. He was subsequently banned from using its online forum.
The charity claims it only banned him after it received complaints about him from other members. But according to Danzig the charity has never supplied him with details of any complaints.
The dispute has since escalated and Danzig is worried about the damage caused to his reputation by the charity’s claims that he had spread “misleading and inaccurate information”.
So he is demanding that the charity correct the statements it has made and circulate this to all the original recipients.
He is also convinced that the charity would benefit from a governance overhaul in order to fundamentally change its “evasive and secretive culture”.
The Foundation’s chair, Terry Lloyd, wrote a long letter to Danzig last month thanking him for his contributions as a volunteer and acknowledging the “distress” he has experienced “at what you perceive to be your unfair treatment at the hands of the Foundation”. Lloyd urged Danzig to “receive the letter in the spirit it is sent” and to draw a line under the issue and move on.
But Danzig said the letter, while appearing on first impression to be a peace offering, doesn’t make “any helpful offer of amends or corrections” and so he is not prepared to let the matter go.
