[tri-med] excerpt from the latest registry memo for members

i thot some of you might find this interesting.

World Congress on Chromosome Abnormalities

When I started The Registry, I thought we would be enabling the study of just 
another group of as of yet unstudied genetic syndromes. A lot of rare genetic 
syndromes were actively being studied. Why couldn't ours be among them too? I 
failed to appreciate several BIG differences between our syndromes and the 
other genetic syndromes that I was saw being actively studied. These 
differences were based less on fact than on prejudices. These prejudices are:

1. You can't do anything about chromosome abnormalities.

2. You can do anything about mental retardation.

There are many other genetic conditions for which it is commonly believed that 
if you find the gene(s), understand the biology, you could cure or treat them. 
This is not believed to be true for chromosome abnormalities or mental 
retardation. But there is no logical reason for believing that chromosome 
abnormalities are any less treatable than any other genetic condition. So we 
still have two VERY BIG hurdles to overcome, but they are based in prejudice 
and not fact.


These problems are not unique to the chromosome 18 syndromes. They are the same 
for all the rare chromosome abnormalities. Since there is more power in numbers 
it makes sense to band together with the other rare chromosome abnormality 
groups to try to bring attention to the problem. So we are planning to host The 
World Congress on Chromosome Abnormalities. This conference will replace our 
usual family conference in June of 2004. The World Congress will have 2 parts. 
The first 2 days will be similar to our usual conference, with presentations on 
a variety of issues of interest to parents. The third day will be for both 
families and scientists and will include updates on a wide variety of 
chromosome abnormalities. Day four and five will be aimed at a scientific 
audience. Parents and scientists are welcome to attend the entire conference or 
just their respective days. The scientific part will only happen if we are able 
to obtain grant funding from NIH, for a proposal submitted June 1, 2002. The 
family part will happen regardless of the funding for the scientific sessions. 


We will be the lead organization, but several other organizations will be 
helping us plan this event. SOFT (Support Organization for Trisomy 18 and 13) 
will be our main partner helping us to plan sessions for parents of medically 
fragile and more seriously affected children. Because this will be such a big 
conference, there will be several concurrent sessions to choose from at any 
given time. Other chromosome specific organizations that have agreed to be host 
organizations and have this conference be their annual conference are: 

Disorders of Chromosome 16

Chromosome 22 Central

Distal Trisomy 10q families

4p- Support Groups

5p- Society

11q Research and Resource Group

We will be advertising this conference widely and will of course welcome anyone 
with any chromosome abnormality, not just members of the above groups. There 
will also be sessions for each organization to have their own organizational 
time. I think that at this meeting Registry members will realize that we are 
light years ahead of most of these organizations, both organizationally and 
scientifically. They have a lot they can learn from us. And we can benefit from 
creating a stronger presence and voice for those with chromosome abnormalities. 


This is an opportunity for us to be the lead organization in the understanding 
and treatment of chromosome abnormalities. 

______________________________________________

Upcoming Conferences

2003 Conference - Hershey, Pennsylvania - June 29th-July 2nd

2004 Conference (World Congress on Chromosome Abnormalities) - 

San Antonio, Texas, June 20-23, 2004.

jude, mom to derek-16, kelsey-14 and kameron-5-full t18
golden, colorado, usa
chromosome 18 registry & research society trisomy syndrome coordinator
http://chromosome18.org/stories_trisomy.htm#Wolpert
http://www.trisomyonline.org/wolpert.htm

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

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