[tri-med] Re: We Need Volunteers For A Rare Trisomy Parent Advocacy Panel In Washington DC (Oct '03)



Okay guys, now that I'm back on-line, and caught up, here's a link
to the information about the criteria for the conference workshop
proposals.  Now that Debbie knows that she will be able to put a
panel together for this, she can submit the proposal, and the odds
are excellent it will be approved.

http://www.dec-sped.org/2003%20New%20Call%20for%20Papers-DEC.pdf

I have the list at the bottom of this post, of potentially interested 
list members.  Those who really think they're interested please send 
the following contact info to me, off list at fawna33@xxxxxxxxxxxxxx 

address
phone
& fax if you have one 

Yes Nan, if you want to send Dom he could travel with Princess 
Phil & me.

Bringing the kids:  This is a perfect example of one of those 
mind boggling problems we have with educational & medical 
professionals who see our kids a few hours per day, and
then send them home for us to deal with till the next time,
but think they could do a better job of raising them.  Unlike
the SOFT Conference who understands our unique life style, 
The Council for Exceptional Children don't, so they have no
arrangements for childcare for attendees.  However, if Jude
does come and brings Kels, maybe she would like to watch the 
kids during the presentation.  A little creative paperwork, 
and my sitter service hours would even reimburse me for paying 
her for it.  And maybe anyone who wants to do more of the 
conference we could work out a child care exchange plan?

There may be some money to help defray expenses, but that's
not a guarantee at this point.

But step one is getting the proposal accepted.....

POTENTIALLY INTERESTED LIST MEMBERS:

Jude Wolpert
Kameron 5yrs Full T18
-------------------------------------------------------------
Mary Capp 
Richard W. 17yrs with partial T16q, deletion 18p & translocation
-------------------------------------------------------------
Penny Victor
Devon 7yrs Full T13 but also with Translocation 13/5
-------------------------------------------------------------
Chris Hassan 
Joanna 28yrs Full T18
-------------------------------------------------------------
Tina Arbogast 
Logan (I think T8M)
-------------------------------------------------------------
Kristina Ward
Hannah 2 1/2yrs T13M w/Robertsonian translocation
-------------------------------------------------------------
Amanda Wilson 
Jake 6yrs (Partial Tri 9 and Kleinfelters Syndrome) 
-------------------------------------------------------------
Nan Welch
Dominic 19yrs T18M, Bi-Polar & ADHD
-------------------------------------------------------------
Steph Bloczynski
Nicky 2yrs PT18p

Thanks all,

Fawna, mom to Philina (PT6p) and volunteer "gofer" to Debbie



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

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