Article No 371
24 August 2020
aHUS alliance Global Action is a small charitable organisation. What it does is visible and transparent. Its work features on this website and its charity administration can be seen online in our annual reports and accounts because we are registered with a charity regulator.
Our means are small though our output is huge thanks to a small group of unpaid volunteers. Like larger charities we have expenses, such as funding this website, to cover. We now cover these costs with donations received , including some donations from our Trustees.
Late last year we started to receive cheque donations from Pay Pal. PayPal Giving had received donations for our charity. That encouraged us to open a Pay Pay account and go through a rigorous application process to confirm our legal status ,and trustees’ identity.
Until we had an approved account we had no idea who was making these gifts. With our PayPal Giving account fully established we could see at last who the kind people were who had set up fundraisers to raise money for aHUS alliance Global Action ( charity no. 1167904).
So thank you to Alex, Annette, Benjamin, D’Angelo, Emily, Jake, Jena, Jenny, Jossi, Karissa,Lauren and Stacci for dedicating your birthdays to raising funds for our charity. There were other unnamed donors too whose gifts are much appreciated too.
It means a lot to us that people are thinking about us. Such donations can ensure our continued activity for the aHUS Global community.
As we approach aHUS Awareness Day 2020, the trustees have decided for the first time make a call for people to fundraise for aHUS alliance Global Action. We have no target in mind , just an intention to use it for the benefit of aHUS people.
Like those who have already raised funds using Facebook Fundraising* ( it partners with PayPal Giving with whom we are an approved charity ) we recommend creating Fundraising campaigns where donations go to our charity i.e. aHUS alliance Global Action. Such campaigns could be linked to birthdays for example or to Awareness Day 24 September.
As mentioned our output is huge : We have
– created and continue to promote aHUS Awareness Day and its themes and imagery;
– participated in rare disease day activities and raised aHUS’ profile within it;
– authored articles on all manner of news and topics relating to aHUS;
-. facilitated a Global aHUS patients’ research agenda to structure, and let investigators know, what matters from research;
– interpreted aHUS research articles for non academic readers;
– undertaken our own aHUS research and surveys to gain more insight about what aHUS and its treatment is like;
-kept a dialogue, and continue to work, with some of the best known aHUS researchers, expert centres and networks in the world;
– encouraged and provided information and engagement resource for patients to advocate for themselves and others in their nation;
– kept a multi media resource library about aHUS and Complement;
and we aim to continue for some time yet. But maybe we can do other things with your support. It would mean a lot to us.
*Fundraising on Facebook
More information is available at this link HERE