you can do what I did and write an editorial piece in the newspaper in the communities section. I did that myself when I wrote some articles on epilepsy. I felt more people needed to know what really needed to be done in case I had a seizure. Plus it is free and it costs you nothing.
Try to set up meetings at your local boys and girls club of america. After all, if these kids are aware of it, they will tell their kids and so on. YOU ROCk!!!!!!!!!!!
my brother-in-law has this an it can be very painful. He has had to have several surgeries due to skin and bone and tissue malfunction. It is a wonderful way to raise awareness at your local meeting places. How about posting a sign in your local coffee shops and markets. Call a meeting to order. Start there. Also ask your Alderman in your Ward if you are in a large city like Chicago or your towns Mayer for assistance with this matter. They will perhaps offer you some good advice? If you call a meeting to order start by fund raising get a Doctor or a medical team involved in your community and ask around at your local Hospitals if they support RSD fund raising etc.