You obviously have a right to ask for anything. but I just put forward my approach.
I am sure that like other non-profits, IV files taxes and files the neccessary paperwork with the government since I am also sure that IV core does not wish to go to jail.
Some non-profits rake in so much money that they post their financials while others are so small like iV that it is just not a big deal.
When I went for lawmaker meetings, at least 2-3 staffers recognized IVs name and said they knew about EB provisions since they received information from previous meetings with IV members . I am sure that it is only positive lobbying and persistence caused that.
I would focus on the positives and use this platform to lobby for relief for EB community since no other org really cares about legislative relief to reduce EB backlogs. Thats just my way of looking at it. I appreciate your viewpoint but just wonder whether that energy can be re-focussed.
Look forward to meeting you at the next advocacy day. By the way, you can schedule meeetings with your local senator/congressmen to discuss EB provisions. No need to really wait for the next advocacy day.
Quote:
Originally Posted by sorcerer666
Thank you for the explanation!! I appreciate your dedication to IV, But I really think this isn't a random question. It's a legal question. As I said in the first post, "Am I gonna get an answer? No!"
I will indeed come to the next advocacy day effort. I am genuinely interested in lobbying for our collective cause.
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