Now is a time to reflect on it perhaps.
When it began over four years ago, the aHUS alliance produced a handwritten list of aspirations which were to underpin its work.
“To hold major global event” was one of those aspirations which the founding affiliates from Belgium, France, Italy, Russia, Spain and the UK agreed to pursue.
aHUS Awareness Day is what resulted.
Now many hundreds are involved and these aHUS patients and families own their day.
It is but one alliance collaboration within one part of the alliance’s mission.
Raising Awareness of aHUS.
It is, of course, what the alliance does all through the year, as do national aHUS patient organisations ,and even individuals who advocate on behalf of themselves.
But on 24 September we can all do so as one voice.
It is a sobering thought that it is still likely that the majority of aHUS patients around the world may not even be aware that there is such a day about, and for, them.
That is why in response to another alliance aspiration it set out to help others develop advocacy in countries which have no patient groups themselves , that has become aHUS Rest of the World and is led by Jeff Schmidt . Jeff is well positioned to do that given his relationship with many aHUS families reaching out from countries, where they perhaps only know of themselves as being affected by aHUS ( we all have been there).
It is worth, a ponder at this point that, although in the West some aHUS groups have considerable resources, indeed some even afford to pay themselves for what they do for aHUS patients ,most aHUS advocates, including those involved with the aHUS alliance Global Action, chose to be unpaid volunteers and have minimal or no resources but yet achieve so much. They do it because they have been through stuff and want to change stuff.
It was certainly a joyous moment for the aHUS alliance when families in Poland recently decided the time was right for them to come together as a patient organisation and affiliate with the alliance.
Some of the other original aspirations of the alliance have added another dimension to the alliance’s mission, i.e. to work with international aHUS researchers..
As it did, as part of Rare Disease Day 2017, the alliance, with Jeff Schmidt’s lead, has again created another video to enhance dialogue with aHUS clinicians.
Some may have also noticed, in the alliance’s website, the building up of a substantial list of aHUS clinicians/researchers whom the alliance recognises for their significant contribution to aHUS knowledge and care.
The thoughts of one of those clinician/researchers from Romania illustrated the aHUS Dialogue extremely well.
The alliance has also featured videos of another global collaboration, its symposium in Boston in August positioning aHUS in the context of TMA. Spearheaded by Linda Burke it was an enormous success at the time ,but ,going forward through the legacy of the videos of the talks, it will prompt people think differently about aHUS.
Thinking aHUS is what we all want people to do on aHUS awareness day.
It is as simple as that in the end.
When the I think about aHUS Awareness Day I think of Francisco Monfort/Mireya Carratala and Linda Burke, the three aHUS advocates who turned an alliance aspiration into a concept, and a concept into a reality.
These three still work the hardest to make aHUS Awareness Day a success.
The aHUS alliance has changed since it began, and will no doubt change in future, but hopefully it will continue to be part of day where more and more aHUS patients and families around the world join in with their day.
Because those who began the alliance thought, back then, that good will come together.
And now here we are today with aHUS Awareness Day 2017 behind us everywhere in the world.
So it is on to aHUS Awareness Day 2018! 🙂
Len Woodward
aHUS alliance
