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Much ado about nothing
The AGNSS journey had begun, and it was to be aHUSUK’s key task and focus for several months.
At the same time the demands of being a charitable organisation with objectives had to be addressed.
None of the trustees had any knowledge or experience of running a charity, although the trustee board possessed a range of skills and professional backgrounds. The charity had to be registered with the Charity Commission in England & Wales if it needed to receive funds, and for that it needed a bank account.
It also needed members, the charity was to be an Association ( i.e. the membership decide what is done) not a Foundation ( Trustees Decide). We needed to hold an inaugural general meeting and soon.
Members were also needed to make AGNSS’ review more inclusive and informed ,and for that the charity needed to be known about. It was too simple to expect the NHS to let us know who the aHUS patients were, and we soon got to know that the rights to personal anonymity superseded the right to know how their illness could be treated better and to help with getting it.
At this point the vast majority of aHUS patients knew nothing about what was happening to help them. Sadly, neither did many of those whose job it was to care for them.
Not all patients wanted to be treated either and we soon found out that not everyone shared the desire to leave a life of dialysis. One of the trustees thought that and resigned as he could not support an application for aHUS patients to receive eculizumab. Charities for health action are frequently created by disparate strangers with varying views. We went our separate ways.
aHUSUK objectives, as all health charities seemed to do, included raising awareness of aHUS and getting better understanding of the disease( something individually even we rapidly needed to do) as well as provide support and help to those affected by aHUS. For the latter we saw having unfettered access to eculizumab as the main way we could support and help. Juggle the key words around awareness help understanding and support and result is aHUS and that becomes the underlying theme for an aHUSUK website. Online visibility was almost mandatory for a charity , our website was in the process being developed by me, ( iT and finance often went hand in hand back in the day!). Computer skills had to be learned and quickly.
We needed a logo , but had not got professional design skills nor could we afford to go to design consultants. It had to be home made and thought had to be given to it as it had to represent our disease and purpose.
It was left to me!!
The logo concept I developed was based on a double twisted moebius band which resulted in three sections representing the triad of aHUS symptoms, anaemia , clotting and kidney failure. The band was also given the colours of the rainbow to symbolise our optimism for the future. The website had a backdrop of blue sky to conclude the feeling of “hope” that aHUSUK was to give. That exhausted my design capability! It would have to do.
Athough we were beginning to think as a large charity; and, with a website creating an image and perception of aHUSUK to back it up ,who would really know what was behind it all. “Two old men in a shed” was what the secretary and I said sometimes to reflect the reality!
The key difference for us was that large charities, although were governed by unpaid trustees like us, also had paid employees to do the work. In aHUSUK trustees did the governance and all the work too for no payment. No wonder the reluctance!
Years later a blog appeared on aHUSUK’s website which contrasted what we had to do compared to other established charities
“Very few people would know about Naglazyme, $485,747 annual cost per patient ( the second most expensive after eculizumab), used to treat mucopolysaccharidosis type VI, which is better known as Maroteaux-Lamy Syndrome. In the UK the patients are represented by the MPS Society which has 12 trustees, interesting to see they are funded among others, by three pharmaceutical companies and employ 13 staff in dedicated office accommodation. MPS patients require the third most expensive drug too.
aHUSUK has four unpaid trustees who have had to do much the same as the MPS Society with some of their out of pocket expenses for conferences and meetings found from an unconditional educational grant from Alexion.”
I will come to funding of aHUS charities later.
With the splendid efforts of our Secretary we became a registered charity and I got it a bank account. Now we not only had to comply with registration rules and responsibilities but the job of accounting for expenses and complying with financial reporting regulations was to begin. All this required time to do whether the charity was doing things or not.
As it was there was much left to do and we had only got to Christmas 2011.
Len Woodward was a founding Trustee of aHUSUK and a founding affiliate of the aHUS alliance. He is also a Director Trustee of aHUS alliance Global Action. By his own admission he is a reluctant patient advocate , it is something that he had not been prepared for, and which he has no natural inclination to do. But for nearly 8 years now that is what he has been doing.
In this series of blogs Len Woodward explains and describes how he became an aHUS advocate and where the journey has been taking him to this day.