[tri-med] Re: [tri-family] Re: mosaic list monitor

----- Original Message -----
From: "Harris Rachel L Civ WRALC/FMH"
> no one responded about why this colorado mom cant sign up on the mosaic
> listserv....any ideas for me please?

I am not sure where everyone is trying to sign up to "my" mosaic list
because as a list its not overtly promoted anywhere.

My guess is that people are finding the mosaic list on Yahoo's groups, and
trying to sign up there. However that particular list no longer exists
(Yahoo's fault not mine) and I dont get notification of people trying to
subscribe so that I can let them know. I also cannot completely close that
list. Again Yahoo's fault not mine and I have long given up trying to get
any answers from Yahoo - thats why we switched to Freelists in the first
place!!

The other possibility is that there is a Tri-8 mosaic group that used to
have a list but I believe that it closed some time ago due to lack of
support. But unless someone gives me a copy of the returned mail, or even
the address where they are getting the information I cant help them.

I do have a mosaic list in Freelists but it is very very small, and its main
intent is for research purposes, which like most things is slowly dying
because no-one wanted to help with the admin stuff. Trisomy related issues
are discussed on Tri-Med and Tri-Family because they are the same, its
really only development that can differ to any great degree and by the time
families reach that level they are pretty much used to flying on their own.
As a result the tri-mosaic group only generates one or two mails once every
few months.

I have no immediate intentions to promote the mosaic list until on line
numbers of mosaicers increase and or I get some help. For example I still
only have a list of some 60 or so T-18 mosaicers and only a dozen of these
are online. The other trisomies are even smaller in number (remember
mosaicism is extremely rare - it's incidence is less than 1% of all trisomy
cases). Until numbers increase there is no way that I can do everything for
everyone. I am just one person, who at the moment after 6 years of doing
these groups on her own is taking a temporary sabbatical after all the s***
I went through earlier this year. Plus because of personal circumstances I
am only getting to my mail once or twice every week - maybe. That should end
in another week or two though.

If people need contact with doctors who specialise in mosaicers there is one
geneticist in Canada, and they have their own website.

I do keep copies of any mosaicers who contact me and will always do what I
do when asked to connect people - that is write to the other party and ask
if they want to be connected. The problem is however that people change
their e-mail addresses and I dont know. And I cant do a snail mail connect
because people are reluctant (until they get to know me) to share their
snail mail details.

Subscription the freelists mosaic group is the same as for these - send an
email to tri-mosaic-request@xxxxxxxxxxxxx
with subscribe in the subject.
Or online directly by going to the freelists website
http://www.freelists.org

Remember we are an informal group, with limited resources (and thats
basically me since Sue retired) and only one benefactor, who pays for the
Trisomy Online Website. Even my own homepage is in danger of closing (if it
hasnt already done so) because of a lack of funds. The ads on the websites
only pay for one month of the sites a year and there have never been enough
purchases through Amazon (in the three or four years its been there) to
generate a cheque.

I may not have gone where I intended to go, but I think I have ended up
where I intended to be.
- Douglas Adams

Keep Looking for Rainbows!!!
Karen, Mum to Alex (7, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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