More about the Reluctant Advocate.
The alliance had agreed to have the First aHUS Awareness Day on 24th September 2015.
The theme was “communication” and the idea was for aHUS patients to send out on the Day an “air mail letter” in the social media with an aHUS message .
aHUSUK supported the project and posted a number of news items letting people know about it and explaining how to make an air mail picture.
The message I sent out on the First aHUS Awareness Day
The Awareness Day alliance leader, Linda, also suggested a ten day programme of promotional news items to draw peoples’ attention to the day.
I choose to reprise some aHUSUK material , premier a number of videos from the aHUS Patient and Family Conference . But as a centre-piece on 20 September 2015 I featured an article about Conrad Von Gasser which had been written especially for aHUS Awareness Day by Prof. Bernard S Kaplan.
The programme was:
10 days to go:
Video premier of Dr Kevin Marchbank’s talk at the conference together with a blog written by him about the ” knowns and known unknowns of complement and aHUS”.
9 day to go :
A reprise of the aHUS Patients Experience Report aHUSUK evidence to AGNSS, CPAG and NICE. written to give insights into what having and living with aHUS is like for those who do not know. A rare outing in the public domain for this ground breaking piece of qualitative research by aHUS patients about having and living with aHUS.
8 days to go:
I gave a brief overview of the access to eculizumab status in 15 countries around the world.
7 days to go:
An article by Prof Tim Goodship to accompany the video premier of his talk at the Conference about how genetics explains why some family member onset and others have not in a familly in Devon UK
6 days to go :
A very special day it was the 20th September the day on which Prof. Conrad Von Gasser’s article using the term haemolytic Uraemic Syndrome ( in Swiss) appeared in public for the first time. To celebrate it, Prof Bernard S Kaplan wrote a special tribute to Conrad for the first aHUS Awareness Day ( a copy of it can be found in aHUS Info click here.
The 20th was also the day that aHUSUK members were completing their research fundraising walk ” Journey for Life ” across the 5 bridges over the river in Newcastle upon Tyne. As a postscript to that, Prof Goodship told me about a song he recalled from his student days, “Five Bridges” performed by a group from Newcastle called…..”NICE”!!!
5 days to go
“Think aHUS ” my message for aHUS Awareness Day. In June I met transplant surgeon Mark Stegal from the Mayo Clinic Rochester USA. He had been speaker at the “HUS and other disorders” conference in Innsbruck , Austria. He had been introduced as a “rockstar” of transplant surgery. He talked about a case study of a patient of his where the transplant went wrong. The graft was OK but a TMA was evident . The patient had aHUS , it was found he had CFH mutation. Mark said that could have been known as the cause of the original kidney failure , but it wasn’t thought about.He said ” if you are not thinking aHUS you are not going to diagnose it” Getting people to “Think aHUS ” is what aHUS awareness day is about.
4 days to go
I reprised material about aHUSUK raising “political awareness” of aHUS.
3 days to go
A premier of the video of Prof ( then Dr) David Kavanagh’s talk at the Conference about the triggers of aHUS.
2 days to go.
Well not the day itself in UK , it already was in Tuvalu , near the international date line. aHUS Awareness Day lasts for 48 hours. I had put 3 “count down to aHUS awareness day” clocks for the furthest east , GMT, and the Midway, the furthest west now the aHUSUK Reminded about that, I recently checked the website and I had not switched the clocks off so at the time of writing it has been over 1450 days since the first aHUS Awareness Day began!!!. (For clocks click here)
1 day to go.
aHUS awareness day itself so I marked it by premiering the video of the International delegates of the aHUS alliance talking at the Conference. It can still be seen by clicking here. What the speakers say still resonates within , and from , the aHUS alliance.
I also wrote an epilogue as the day closed in the far west Pacific Ocean about what I thought the day had been about. This is shown below together with some comments it received: