Good question, Andy. I must say, that I had a very hard time myself years ago. I basically had to stand up and scream for anyone to hear or listen to me, and even then it was a challenge. I became totally fed up of the *clique* that formed between TAG and CAF, and got myself involved in things like meetings and fundraisers. After a few years of doing that, I was approached by the President (at the time) of the Suffolk Chapter, and he asked me if I would be interested in being Suffolk's Patient Services representative, because I had been through so much, had a good deal of experience, and had a great rapport with the patients, families, and volunteers. Since the job title was for a paid employee, I declined, but I agreed to do it on a volunteer basis, and we changed my title to Patient Services *Coordinator* instead, to avoid confusion.
I'm not saying that everyone needs to do what I did, but I think it helps to get a little more involved, whether it be going to meetings or helping out with fundraisers, or even making your own fundraiser. You can try even little things to get your voice heard. There are just so many patients, and it always helps to put a face to someone. If you really need help, my advice would be to keep pushing. If you need something from the Foundation, keep calling. If one person doesn't help, get another person. Keep going until you get what you need. Don't let anyone push you aside. Each one of you are just as important as the next. As I had said, there are a lot of *cliques* going on, which is common in many organizations. I was never part of a clique, and I never will be ... because I don't want to be. The only thing that the word "clique" says to me is "exclusion" and that's not what I'm about. I give everyone the same attention, and try to help as much as I possibly can.
Yes, it can become very political, and I have always believed what has been told to me for ages, which is "It's not what you know, it's who you know." It's sad, but it's true, unfortunately. Just keep stomping your feet until you get where you want. If someone knocks you down, pick yourself right back up and keep barreling forward. We're all capable of getting our voices heard, but we have to fight for it.
