Hiya Hon.

I'm here? Wow. Colin's here too? Double wow. Things are odd on Yahoo
now. Groups seem to be dying a long, drawn out death.

You know this is an interesting question you pose. I've been on the
board of directors with Debra Ireland for about four years now, and I
still can't ever think of ways that Debra could have, or now could
contribute help to me or my family. They wanted me in to have a
representative of EB Simplex on the board to balance things out, but I
can't say I'm the right representative... my own experience has led to
to the conclusion of "Nah, we're alright thanks.... let's see what
other help we can offer those with the more severe forms?"

I guess things might be different if it was the early 80s again and my
mother's voice could be heard... or maybe those with Simplex who have
more of an involvement than I do.

Good luck with what you're doing :)

Dee

--- In butterflychildren@yahoogroups.com, hon_w.rm <no_reply@y...> wrote:
>
> Hi to all members,
>
> For those of you who recieve help and support from the charity DebRA in
> your country what sort of help do you currently recieve?
>
> What other improvements or/and support would you like to see the DebRA
> charity to offer in the future?
>
> I am doing some research in this area, as I have the opportunity to
> make my voice heard by charity DebRA.
>
> Thanks for your help
>
> with best wishes
> Hon
>