There are other things we can do as well. My daughter has organized a fundraising event in January with the proceeds going to WPI. It's great not only because of the donations but raising awareness about ME/CFS with the general public.
And certainly in Ireland, if one wants it, a local media outlet will often cover a fund-raising event in one shape or form. So the awareness-raising doesn't simply have to be those at the fund-raising event.
Well done and thanks to your daughter from me.