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Finding the Cure…

So I want to really put together a West Coast Hyperinsulinism non-profit or fundraising organization. I think UCLA does some research on HI and I think it would be great if the West Coast had some sort of hospital or facility that we could go to with doctors who are just as educated and knowledgeable as the ones at Children’s Hospital of Philadelphia.

Problem is I don’t even know where to start. There are multiple fundraising organizations out there, but they seem either exclusive to their areas or just not active and I’d hate to turn into one of those who sets up but then does nothing.

What I want for the organization is the following:

Support for families with new diagnosis.
Information on the disorder and how it’s treated. Things like food concerns, illness concerns, etc… would be helpful especially for those looking to learn more about the disorder.
The different types of the disorder and what that means.
Group Support, through a forum, for families to speak with each other and know they have someone to turn to.
Physical meetings, events, conferences. Where families can get together and children can meet others who have their conditions and make lifelong friends.
Provide financial support and help to those who are going through the diagnosis phase or spending time in the hospital. Hospital trips can be costly especially in the areas of food and gas for the parents.
Fundraisers to provide money to hospitals in the area (like UCLA or CHLA) who specialize in research on this disorder.

So that’s what I want to do. I don’t even know where to start or how to get people involved. I would think first I’d have to think of a name. Getting all the information together too would take a long time. But I have time right now, since I am job hunting. I don’t know how much it costs to get a non-profit together though. That might be the deal breaker because I need to have non-profit status in order to be taken seriously.

Anyhow if anyone knows anything on how to do this shoot me a comment!