run a successful non-profit

About two years ago I got the idea for a non-profit organization that would help people with their problems with Reflex Sympathetic Dystrophy. And, with a lot of work I thought that we had a good group coupled with a good web site, and a few hundred dollars in the bank. But the truth is, Fighting “4” Us is not the organization that I dreamed it could be. Not yet anyway. Originally I wanted Fighting “4” Us to be an organization in which people could come to and find a friend or a group of people that could help them with all their problems with their disease. Today, the website looks like a carbon copy of every other help people with such and such a disease web site. All that it offers is information as to what RSD is in terms of how it affects the body, and how to find a doctor to take care of that body. What it doesn’t talk about is the human side of RSD. The fact that RSD affects and effects all parts of who and person is and what they do. So, my small group of helpers and I have decided to make a change to the web site. To make it more friendly and to show people how to deal with the more human side of RSD. It won’t be easy, there is a lot of changes that need to be made to the website, but I believe we can do it. We have to do it. Otherwise, Fighting “4” Us will go down in history as another site that doesn’t talk about the real problems that come alone with having RSD. I can’t let that happen, and I won’t.

I had the first meeting I’ve had for fighting “4” us since I’ve been out of college. Yes I had meetings when I was actually doing the whole college thing, but now the whole organization seems to be taking on a different tone. It is becoming more of a proffessional organization, rather then a college club. This is exactly what I want it to be, so I’m happy.

There was only three people at the meeting, my mom, a friend of mine, and me, and I thought for sure we wouldn’t get anything done. Boy was I wrong! We edited one of the articles on the web site and talked about how to fundraise. We even got up the idea to create a fundraiser in the form of a valentines day dance! All in all, a good first meeting :).

I have a web site! It’s not open to the public yet, and it needs to be edited and looked through thoroly so that it can be the most perfect thing yet. I’m so excited. YEY!

So I met with a person who is going to do the design for the web site of my non-profit organization. Great right? well that was until she had all these really fucked up problems when it came to the domain register. GRAH!!!! Nothing’s ever easy is it….

Right now I am trying not to feel defeated. Yes, there is good things going on with the group. I have found a women who is going to help me build a web site and do it in a way that will save us money. The thing is, it is very hard to move forward without people. The by-laws which I had to create in order for the government to approve my forms have plans laid out that can not happen without people. I don’t know what to do.

My non-profit organization is called Fighting “4” Us. It’s goal is to help all those with RSD have better lives, and to help find a cure. What is RSD? you ask? good question….

RSD stands for reflex sympathetic dystrophy. the simple way of explaining it is this:

When someone injures themselve, there sympathetic nervous system goes in and causes pain. When this injury heals, the sympathetic nervous system is supposed to turn off. Well with RSD for some reason this system either can’t or won’t turn off. They don’t know why, so don’t ask.

RSD causes a long list of problems, but the most important is pain, and lots of it. Classic RSD pain is a burning pain that is constant. The pain may also be crushing. RSD also causes depression and insomnia, along with a whole host of other problems that I don’t want to get into right now.

Anyway I’ve had RSD now for about ten years. And because I am a person who tends to sympathize with other people, I think about the other people who have RSD a lot. This is where the idea for Fighting “4” Us came from. Currently I have recieved non-profit status from the government, but that’s about it. I am working on getting the web site up, but that takes a really long time, especially when you are working by yourself and am in a lot of pain all the time. When I get the web site up, I will put the link in here, though I doubt anyone actually will read my entries. So that’s that for now!