Yesterday was Robert Gregory’s Memorial service in Liverpool. It was a moving event, and Bob would have been proud. In this special blog for Black Bone Disease Day we remember Bob, and all the fantastic work he did throughout his life. Our CEO and Chairman, Nick Sireau, attended the event, and gave a speech remembering Bob. Nick bases today’s blog on the speech he gave.

When Bob set up the AKU Society 12 years ago, he already had a vision for what he wanted it to accomplish: a treatment centre in Liverpool for all AKU patients.


And he worked tirelessly towards that.

I can remember meeting Bob for the first time. A tall, kind man with a passion for justice, always willing to help others.  He was appalled that, despite AKU being known for more than 100 years, still nothing was being done about it. He was determined to make this change.

There I was, still trying to come to terms with the diagnosis of AKU of my two children, wondering what on earth could be done about it.

Bob filled me with hope that something could be done.

He’d already convinced Prof Ranganath, now the world’s leading expert on AKU, to join him. He’d registered the AKU Society as a charity. And he’d secured funding from a company called Swedish Orphan in order to setup the world’s first website for AKU patients.

Bob was in contact with AKU patients around the world, gathering information and sharing it, making contact with the team in the US at the National Institutes of Health, who were also researching AKU.

In 2007, he organized a major reception at the House of Lords, hosted by the patron of the AKU Society, Lord Ward Atherton, and Baroness Cox at which leading scientists, including from Liverpool and the NIH, described plans to develop a treatment for AKU.

Bob was the key driver behind the world of AKU. Patients from around the world have contacted us to express their sadness at his passing. Without him, none of what has been accomplished could have been done.

That is why we were so proud when Robert Gregory National AKU Centre was opened last year, in Bob’s honour, at the Royal Liverpool University Hospital.

Bob, we will miss you. On behalf of the AKU community, thank you for all you’ve done for us. Today is Black Bone Disease Day- placed on this day because it is the birthday of Sir Archibald Garrod who first discovered AKU in 1901. This Black Bone Disease Day we remember not one man, but two great men.

Today we dedicate Black Bone Disease Day to Bob Gregory.