Wed Aug 18, 2004 12:15 pm

"CHERUBS Volunteer Department" <volunteer@cherubs-cdh.org>

Advisory Committee Update

Hi everyone,

(please forgive the typos, as I'm trying to get a lot of e-mails out
today)

Well, I think we finally got the listserv straight and almost all the
members on the list. Just a reminder before we start - what is said on
this list between the Advisors, STAYS ON THIS LIST. That means, no
outside discussions with other members.

We have several issues that I need your advice on:

1. Main Listservs - as most of you know, from time to time we encounter
disputes between members. Sometimes they quietly are mended, sometimes
it's a public dispute which ends when someone quits or I have to boot
them off of the list. This seems to happen every 6 months to a year.
Our list has been around for 5 years now and we've had to ban several
members. They were warned, repeated the rude behavior, and then were
banned. I hate making the decision to ban members but sometimes it
just has to be made. In 3 instances, abortion was the topic of debate
and other parents were rudely attacked. In 2 instances, religion was
the issue that other parents were attacked about. In 1 instance, a
member caused several problems at a conference and it expanded onto the
list. And in the latest instance, it was merely a misunderstanding
between 2 members that blew out of proportion with attacks off of the
list.

Sometimes I feel like a kindergarten teacher correcting adults on the
rules of common courtesy. But thankfully, out of 10 years and 1400+
families, I can't really complain about a few bad situations. So all
in all, we are very lucky that we haven't had more problems.

What I need help on is the fact that when I ban members, I get
personally attacked off the list, via e-mail, phone, etc. I would like
to start taking votes among our Advisory Committee on whether members
should be banned or not. That way the decision is a joint decision and
more fair. As fair as I try to be, it still would not be as fair as a
group decision. And honestly, I can avoid the personal attacks
(hopefully) when this happens if I'm not making a unilateral decision.
 

2. Other Groups - That leads me to another huge problem. Again, a
reminder that what is said here, stays here. I won't mention names
because I don't think it's necessary at this point and I don't want to
stir the pot anymore than it already is.

A few months ago there was a misunderstanding on our main listserv.
One parent said something that another parent mistook as a personal
insult, though many other members told her that wasn't the case. She
got upset and quit the group (this is about the 5th time she has done so
in the last few years). In the past, I have calmed her down and talked
her into rejoining the group. When she quit, she sent an e-mail
demanding that I remove her from all lists, volunteer positions, and
remove her cherub's story from our site or she was going to sue
CHERUBS. This time, I just didn't have the time to do that and sent a
quick response. In hindsight, I probably should have coddled her and
this would have blown over by now, but I didn't. This was my response:

________________
 

I think you're overreacting, but ok. I will remove your name from the
volunteer list and will remove the link to (cherub)'s site by tomorrow.
We will miss you.

________________
 

And this was her response:

----------------------

I'm over reacting - that is rich - but it also comes from someone who
had a CDH survivor for quite some time. To say I have "limitations"?
Like I couldn't have handled a child with a problem or a problem MORE
than CDH - (her cherub) was looking at kidney problems - possible
transplantation and AIDS - perhaps because of tainted blood from Blood
Services!

Limitations? Over reacting, huh? I don't think so - perhaps you should
look at the way you have been UNDER REACTING. You start a good show for
some program for CHERUBS then NO FOLLOW THROUGH! NONE!

You don't reply to emails when a Rep is requesting a review of a
document to send out to Hospitals, I can't send it without your
permission! You make it impossible for anything to get done.

Then this fundraising! Hell, you knew I had experience! You didn't ask
me to volunteer for that but picked people I KNOW WHO HAVE NO EXPERIENCE
FUNDRAISING!

But I'm over reacting. No, I think that you started something that you
now have no idea of what direction to take it in and don't want any help
because you have your own CONTROL issues.

----------------------

All of that was totally out of the blue. I responded and corrected her
on a few misconceptions she listed about CHERUBS and I apologized if my
previous e-mail offended her but it was not my intention and I also told
her that I thought she was a great mom to her cherub because it really
bothered me that she thought I thought otherwise. I won't post all the
other e-mails but she responded with a more attacking e-mail, to which I
did not respond. She is attacking me personally and CHERUBS, with all
sorts of outrageous accusations that have no basis. I have not responded
to her since, even though she has sent many other e-mails.

A week later, after numerous inflammatory e-mails, she requested to join
CHERUBS again and I told her no. The e-mails have escalated since then.

Anyway, I don't want to get into a "she said - she said" thing here.
That is exactly the type of behavior I try to stop within CHERUBS. But
I'm telling you all this because it has really blown up.

Since those e-mails in January, she has e-mailed me every other week or
so with threats to sue CHERUBS for one thing or another. She has
turned us into the IRS, turned my personal business into the Better
Business Bureau (even though I've never done personal business with
her), and is also threatening to sue me personally. All of this is
unfounded and I have no fears about being turned into whomever because I
am meticulous about dotting my I's and crossing my T's. Even though I
don't respond to her, don't add any fuel to the fire, this continues.
The latest threat is that CHERUBS is illegally conducting medical
research (we aren't) and that she is personally suing me because of
it. I have yet to receive any legal documents from anyone involving
her claims.

I'd be lying if I said this didn't have me worried. Even though CHERUBS
is doing nothing wrong, I am very protective of our reputation. I
couldn't care less what anyone thinks of me personally, I don't run
CHERUBS to win a popularity contest, but CHERUBS is my 2nd baby and I'm
rather like a lioness protecting her cub when it comes to our group.

But it gets worse - in February she formed a group and named it
"CherubsRUs". She has since changed the name. She has around 25
members, many of our volunteers included, and that in itself doesn't
bother me. I'm all for parents getting as much support from as many
sources as possible. The problem is we've lost volunteers because of
this new group, some of our private info that volunteers are privy to
has made it to her group, and portions of our materials and legal
documents have been plagiarized by this group. At the same time she is
attacking me personally, she asking for prayers for me and my family
from her group. And while she's threatening to sue CHERUBS for
gathering info from parents for research (which is legal), she is doing
the same thing within her group.

Thankfully, there are several members of her group who are keeping me
updated, even though none of them know any of this. Until this e-mail
to you, our Advisors, other members in CHERUBS haven't known about my
point of view of these problems and issues. Unfortunately, she has
blasted me and CHERUBS to many members, some of which have forwarded
very harsh and inaccurate e-mails to me, to which I do not respond so I
don't fuel the fire.

Now, I am updating you all because I am stuck. I don't know what to do
about our volunteers who are leaking info because I can't pinpoint who
they are. This is a direct violation of our rules. Our members expect
the utmost discretion with the info that they provide us and I am
embarrassed and upset that this privilege has been violated.

I am also worried about CHERUBS' reputation because at this point, I do
not know what this former member is capable of. I have a counter on
every web site that I create (including CHERUBS and my business clients)
and she has been viewing them almost daily, to the point that I don't
when she works while at work because I am picking up her boss' IP
address constantly. I am worried that she will contact my business
clients also with these false allegations and I live in a small town and
don't really need to deal with that.

I had hoped her anger would fade but after 4 months it's only increasing
and I'm afraid it will get dangerous. A mature conversation is out of
the question, I tried months ago when this started. This other group
was formed as a direct competitor of CHERUBS. A little healthy
competition never hurt any organization, but this is not healthy. I
have no problem working professionally with another group, as we have
worked with the Dutch CDH group for 7 yrs now.

It has gotten to a point where I need to do something to stop this
behavior. But I don't want to attack her or make matters worse. I need
to protect CHERUBS' and my business and most importantly, our member
information. I am up for any suggestions on what we should do.

Ok, on to other matters...
 

3. CHERUBS Fundraising - since 9/11 we've taken a major hit in
donations, as have most non-profit organizations. With the economy in
the state it's in, that's understandable, but we still need to keep
CHERUBS running. I've had to cut out sending free newsletters because
it was costing us around $1000 per newsletter for printing and postage.
Overseas postage is very expensive, even for a newsletter. 75% of our
members are on-line and the voluntary removal from the printed mailing
list did not help because only 20% of our on-line members volunteered to
be taken off the list.

We also have t-shirts, cookbooks and cafepress items to sell but they
just aren't selling. Should we put a discount on the t-shirts and
cookbooks? Some income is better than none. Currently cookbooks sell
for $8.50, adult t-shirts for $15.00, and children's t-shirts for
$12.00.

We started a fundraising contest in the last newsletter and have had
only 1 submission.

I've run out of ideas! There is so much we could and should be doing
and with over 1400 families we should be able to do them (conferences,
helping families, etc.) but no matter how much I stress that we need
donations, most of our donations come from funerals when families
request them in lieu of flowers. This really does not settle well with
me.

Any ideas on what we can do?
 

4. Volunteers - we have great volunteers for the most part. 50% of
them are very active and 50% of them are confused or don't do anything.
I am the world's worst at delegating or asking for help. When I do, I
don't think that I do it well because so many of our volunteers have
problems figuring out what to do. I've posted Frequently Asked
Questions, Questions & Answers, Guidelines, set up the Listservs and
still so many are confused (at least I hope that's what it is).

A huge issue for the volunteers is me, very often they don't get info
that they need because they are waiting for me to send it. I've
automated the database to give the Representatives and Card Volunteers
the info they need on the fly, but I'm not sure what to do about the
other volunteers. The Welcoming Committee depends on me for their info,
and I have slacked badly but am trying harder to keep up. But the other
committees should be self-sustaining and they aren't.

Honestly, when I started CHERUBS, I had no idea what I was doing! It's
been live and learn all the way and in the past 5 years we've gotten
into a groove about running things fairly smoothly. But I am missing
something when it comes to the volunteers and I'm out of ideas.

As much as I wish I could, I can't hold the hands of all 75 volunteers,
and most don't need it. But some of the committees really do and I just
can't. I thought Committee Leaders would help and they really have, but
some committees don't have leaders because I can't find anyone to
volunteer for the positions.

I know a lot more members would volunteer and we could get a lot more
done if I was able to organize better or be more pro-active but I'm not
sure what else to try and really need advice on this.
 

Ok, I think that's it for this e-mail. I'm sorry it's so long but there
was a lot to discuss. Please feel free to be blunt and honest and give
your opinions and suggestions. Thank you all for volunteering for being
part of this committee, as you can tell, it is desperately needed!

Thank you!
Dawn