It is a hard job to run a patient organisation. There are so many things that a patient organisation has to do.
In a long forgotten forum discussion, perhaps three years on this site, I contrasted the challenges faced by european aHUS patient organisations with those of the USA's Foundation.
Europe needed "alliance" *and USA needed some kind of "defederalisation" into Regions.
It has taken some time but the Foundation's regionalisation vision has begun and it is building momentum. It is a very good thing to happen for all with aHUS in the States , for the 120 or so newly on-setting patients in the coming 12 months ,and the 1200 or more US citizens who have survived their first encounter.
Regional gatherings of people affected aHUS are like all gatherings of aHUS folk around the world, they create such a buzz of enthusiasm from a joyous connection , you only have to look at the attendees postings on the social media afterwards.
But it does not end there..
Yes there have been talks that have increased delegates knowledge about aHUS and how to live with it, and some new life time friendships have begun which can provide mutual support.
But the engagement has provided a spark of empowerment for those attending to become a "franchise", if you wish, of the atypical HUS Foundation.
How that spark begins to glow brighter will depend on one ,or more, of the 30 or so attendees wanting to sustain the group and become more self determining.
Of course the group will need support and resources initially from the "mothership" but slowly and surely, for example , a "Atypical HUS USA South West" organisation could emerge strong and with its own voice, empowered.
The Foundation is a "not for profits" which I believe has only three legal members. David, Anne and Bill cannot do everything. They depend considerably on volunteers like Linda and Jeff and others to help achieve what the Foundation does.
When reading this website it is apparent that some members have leadership potential which could be fullfilled at regional level.
Wouldn't it be cool if ,within say five years ,those potential regional leaders begin knocking on the "not for profits" door and seeking Regional Director places on the Board.
If that day arrives then I think the regional programme on which the current directors of the Foundation have embarked ,will have trully delivered empowerment to the USA Regions
Those same directors if they achieve nothing else ( which they will) could be satisfied with what they contributed in their time as National aHUS leaders.
For those attending the Regional meeting this year starting in Nashville ( a place I would love to visit) the chance to be a future leader is there.
But as I said it is a hard job to run a patient organisation. There are so many things that a patient organisation has to do .
* the European alliance did not stop there and turned into an international organisation known as the aHUS alliance. More information about the alliance that can be seen on its new website www.ahusallianceaction.org It is amazing where a " spark" can take you!