Karenmae,

If you (and your children) feel comfortable with it I have access to a VOIP phone (free long distance) and would be happy to contact your son and/or daughter.

I have had similar (as I am sure many AS'ers have) struggles and experiences during my long journey with AS. I have only just recently successfully managed to get regular Remicaid treatments for myself after a two year buracratic nightmare where I was consitenly discourage by many many individuals and even the medical community itself because they just did not get it.

Right now I am on the cusp of a "new life" and am launching a new career in the non-profit sector with some friends (my best being another individual with AS). We are creating a new type of organization in that it is run by and for individuals like ourselves, Hard workers, dealing with difficult, challanging and complicated personal situations. Our aim is to make it easier for those who follow us and to make a real life for themselves in a world that denys us real, long term, access to many traditional job markets.

We work mostly online via interactive web and via a VOIP telephone (free long distance) systems. We are committed to creating a "workplace" / "corporate culture" where the individuals specific needs and limitations are taken into account.

It has not been easy for any of us and we have all had to learn many new things and put in lots of hours and so forth but in the end it will be worth it because we impose no artificial glass ceilings on ourselves and we are commited to keeping it that way. We do great stuff including advocacy and support work and fundraising, outreach and so forth.

We all have a wide range of life experiences (ironically, this is one of the "side benefits" if you want to call it that, of being regularly discriminated against, in that we get lots more experience than most people in dealing.

Anyway, I would be glad to discuss our organization with them if they are interested. It is hard to sum us up in a nutshell but basically it goes something like

"a place to go and a way to get there".

We do our own fundraising and advocacy and try our hardest to leave a clear and very wide path for the individuals that follow us. It is really difficult work, blazing new trails where their are so few, so we need all the help we can get.

Cheers,

Chris