Found part of my answer

[Guest guest]

So, I went back through the archives. just to be sure I was not being

paranoid. I wasn't. BUT I did find that I should have remembered this

email before posting anything to the group. Again, if the topics are to

be so limited, I think a specific set of parameters should be spelled out

and posted on the info section of the list sit at groups. This would

prevent people from posting things they think may be relevant to PID topics.

I have had t apologize too many times because I didn't have the proper

understanding of what PID topics are okay to post here...

For instance, and why I am defensive :-) :

Sent from Ursula ON THE LIST back in March 2008:

Patti - Recently several emails have been received to the group that

seemed more of a " broadcast " nature than directly related to primary immune

deficiency topics. Items that are sent to the SDS as well as the

list. I would ask that if you feel the need to relay these emails to the

list that you send them with the PID topic stated and that they are

sent directly to the exclusively.

MY RESPONSE:

Mar 5, 2008

Re: SDA newsletter uploaded to the website

I want to plead my case on this one-- this newsletter has medical

information that can be helpful to all families-- in fact the current

issue has one on how to travel with medications, including those in a

vial like IgG & I felt that this could be helpful for families on

this list. We also have an article on camps for kids with Special

Needs and a list of camps, etc..... I thought that the kids on this

list could qualify--especially since my kids go to an IMMUNOLOGY

week at camp.

I apologize if this was considered a broadcast email. I won't do

this again. I hope that everyone here knows that I was only trying

to be helpful and send info that might be of help. One of our recent

newsletters contains everything you need to know about coping with

chronic illness..... I thought that would be helpful, as well.

I apologize if I was mistaken in thinking that families on this list

deal with chronic illnesses and might find useful information in our

newsletters. Our newsletters are meant for all families dealing with

chronic illness.

I am very sorry if I was out of line.

pattie

I later replied with this:

I homeschool, run a non-profit.,manage insurance claims and medical bills &

take care of 2 sick kids and one healthy kid...taxi kids around I don't

always have time to send out separate emails to both groups and do use the

CC to make things more time efficient. I thought that my topics were

clear-Medical travel, SDA newsletter,e tc... in the past I have told

people about the SDA newsletter and let them know that topics will be

relevant to all affected by chronic illnesses. Even the bone marrow biopsy

day: what to expect how to survive article in the December issue would be

helpful to members of this list-there are several folks whose kids have had

BMBs and I know this topic comes up a lot.

Is it really a rule that all emails to the list have to be sent

exclusively to the list?????

Good night to all.. :-) Sorry for all the emails tonight. I am perplexed

and shocked all in one big ball.