Foundation & Support Report

[Guest guest]

Dear All of us in both organizations. I have not replied to this

because I wasn't sure how to react. My RP was finally diagnosed in 98

and I went directly to the message board, then moved and couldn't get

back on until a few months ago.

So in essance when Angie and Roy and others were there so was I.

I think what we're missing here is we are all indiviudals with our

medical problems and both the Foundation and Support Report should

realize that. This isn't about politics, or if our feelings get hurt

or if we don't feel appreciated. Its about very sick people who need

help.

The Foundation is on the right track for " long term " but is

also there for her connections to doctors her knowledge and she has

been there to help us all individually.

It would be a diservice to all of us who have this disease to not

have her with us. The Foundation and the message board is losing a

valuable person. Please don't let differences of opinion and

personalities hurt us all.

We need to be focused on the ultimate goal which is a cure, or at

least treatments that work.

We all have a responsibility to help each other, doctors,

medications, treatments and support for one another.

Sue Marth