Yes today 24th September 2023 is another aHUS awareness day, the 9th to date.
Ever wonder who is behind this international event and how it began?
An advocate from Spain, Francisco Montfort, came up with the idea and it was supported and developed by another aHUS alliance affiliate Len Woodward.
At a meeting of the alliance in London in 2015, with Linda Burke now involved, detailed plans were developed by Linda and Francisco of what could be done before 24 September, which was to become the date allotted to the day itself.
The following year Linda as part of aHUS alliance Global Action was in the centre of things again and designed the “rising above aHUS” theme and imagery which in the author’s opinion has not been surpassed.
By 2016 Francisco had chosen to focus on raising awareness in Spain only and does so to this day.
And ever since Linda and aHUS alliance Global Action has been actively planning for awareness day in the months, weeks and then each day until the day itself.
On the day itself, Linda spends all her waking hours scanning for any awareness day activity any where in the world and highlighting it for others to see.
Whether that is a video , or hospital stall, an aHUS research article published on the day, someone’s appearance on TV , radio or in the newspapers or someone contacting a politician , if Linda is aware of it then she will be promoting it to a wider audience.
She does not have to do all this of course , it is not a paid for job like some disease organisations do.
It’s all voluntary. Raising awareness about aHUS is what she has been doing as a volunteer on most days for over 14 years now.
The author is a relative newcomer but between Linda and myself we have over 25 years experience of global patient advocacy. Our job is to amplify the global aHUS patient voice, not our own, to those who need to listen.
And to find different ways to do so, to keep it fresh or to reach new listeners. Just like the FDA listened to patients recently for aHUS Day 2023 (see previous article).
aHUS awareness day is special to Linda, and Linda is special to each Awareness Day.
Just saying. ( She will tell me off for saying so publicly!)
Article No. 604