This story started out as a vehicle for Sam; obviously it didn't end up that way. I still feel Sam is the major do-gooder in all of this; Josh and the gang are just there to help him along, like good friends should. Ultimately, though, this story came to be more about Charlie and Deena and, hopefully, the Rare Diseases Act.

The RDA in this story is base heavily on the real Rare Diseases Act of 2001 (S. 1379), which is, as of this posting, still in the Senate. I pared down the goals somewhat and streamlined the objectives in order to make it more manageable. I don't think, however, that I deviated from the spirit of the Act.

Links to the full text of the RDA, plus the text of the Health, Education, Labor and Pensions (HELP) Committee Report on the RDA can be found at the bottom of this page

Or by doing a search for S. 1379 on the U.S. Senate homepage

While Linda Wiley is of my own creating, the National Organization for Rare Disorders (NORD) is not. NORD has been a major advocate for legislation benefiting the some 25 million Americans living with rare diseases and disorders for over twenty years. The NORD website has more information then I could have ever dreamed for: from transcripts of testimony to various House and Senate committees (on which the opening "transcript" for this story is based) as well as policy/position papers, news briefs, and several searchable databases. I could not have written this story without this amazing site. I tried to represent the spirit of NORD as best I could, but I would suggest if you're at all interested in this subject, please go and see what they have to say for themselves.

A few other indespensible sites:

The FDA Office of Orphan Product Development

The National Institute of Health (NIH)

The Office of Rare Diseases (ORD)

The last major aspect of this story, Deena's illness, didn't fall into place until much later. I guess it was at that point that this really turned into Charlie's story. All the information in the story is factual but it is hardly the whole picture. Sickle Cell is a devastating disease for which there is no cure and very few available treatments. If you would like to know more about sickle cell a good place to start is the Sickle Cell Advocates for Research and Empowerment (SCARE) homepage. They provide good basic information and a whole page of useful links. Most of the medical information was gleaned from the Harvard Medical site found on the links page.

Finally I need to say thank you, again, to the wonderful people who were kind enough to beta this for me. Thanks to Abby for her kind words of encouragement and the swift kick in the pants I so desperately needed. Thanks to Julia for pointing out my aversion to punctuation and patiently helping me along. Thanks to Reagan for the brutal honesty, her words not mine, in all things and also for laughing in all the right places. Thanks to Sandra for, well, everything, but most especially her delicate rewording that helped to make actual sense out of what I was trying to say. There aren't enough thanks in all the world for N. for putting up with me from start to finish. She was always ready with endless supplies of encouragement, and this story would never have started, let alone finish, without her.

Hope you enjoyed it.