The journey of the Reluctant Advocate moves along in 2015.
Just after the Paris meeting of the alliance I was contacted by Prof. Tim Goodship. He thought , like I did , that a second UK aHUS Patient and Family conference was overdue.
This time such a conference would be an aHUSUK /Rare Disease Group for aHUS collaboration.
Instead of my preferred anonymity as in the first conference in Newcastle I would have a more active role.
aHUSUK would manage the arrangements and and Tim the RDG would find the speakers.
Having been to the University of Iowa Conference I felt that we had a lot to live up to.
I made two decisions quite quickly. Firstly the education part of the conference would be structured around the “aHUS Venn Diagram.”
So talks would focus on genetic pre-disposition and modifying risk factors as well as triggers with a special emphasis on pregnancy and transplant.Further talks would be about withdrawal from treatment research , patient registries and research fundraising which would add to the topicality and planned research fundraising programme that aHUSUK had in mind for 2015.( see Journey for Life)
Secondly, because I hoped that the alliance affiliates meeting could follow the patient conference on the next day, I felt that international aHUS delegates could get the chance to speak to UK patients.
A date of the weekend 27/28 June 2015 was selected ,long almost midsummer days ,so if it was to rain in England it would at least be warm rain.
I looked at a number of venues in London, a venue which would be most suitable to UK travellers and the international delegates gathering for their meeting. It would give the best travel options.
I settled on The Senate House of The University of London . An impressive 1930s structure with much history. It had inspired George Orwell to use it to describe the location of “The Ministry of Truth” in the novel 1984 and has been used in many films and TV programmes like Batman and The Bodyguard ( The explosion scene was set where Alliance delegates had stood ). Yet another impressive venue to have visited as an advocate.
Date set, agenda designed, venue booked , speakers agreed , conference announced , publicity sorted , catering booked, conference materials printed and collated , roles assigned for reception etc . We were ready if a little exhausted ( the first UK conference had been organised by a professional conference organising company , we could not afford to pay for such a service. It was a case of DIY)
On an exceptionally sunny and warm (almost) mid summers day in London , the conference began. Over 100 delegates attended. It was co-chaired by my daughter and Prof. David Kavanagh.
It was recorded and those talks are still viewable on YouTube.
Enough visiting delegates to the alliance meeting came to the UK meeting to talk about aHUS in their countries There was a place on the agenda for them and their brief talks were among the highlights of the day. They told UK patients what aHUS was like in Germany ( Nacho) Australia (Keri) India (Kamal) The Netherlands ( Joyce) Russia ( Marina) and the USA (Linda) . A video of this session can be viewed here.
This short video titled “A World of aHUS” encapsulated how by 2015 international aHUS patient organisations had become inter connected.It gives insights to both the common and different challenges that each country faces.
All in all , the objectives of this “project” were achieved. It went by so quickly and the audience were kept interested and informed throughout . The video record is still available and remains a lasting legacy of the day.
aHUSUK and alliance delegates then had a social evening by the banks of the River Thames to prepare them for work the next day.