[tri-med] Re: Can you help?

Anyway - thats a few thoughts from me about how I would approach the
situation if I had the time :-)) but right now I am going back to my sick
bed cause my body hurts bad.

Thanks for researching this, Karen.  I will definitely take you up on your 
suggestions in the very near future.  

And hope you feel better soon.  (((hugs)))

--
Kristin - mom to Hannah - 2 1/2 
years old and t13 mosaic and 
Brennan - age 1
> ----- Original Message ----- 
> From: "Glenn Hardy"
> > it was not necessarily put there for parents but for professionals
> > looking for info as `10 years ago the internet was not something that
> > every lay person had access to.
> 
> Actually Susan you have probably hit the nail on the head. The internet was
> a concept thought of back in the 60's (yes THAT long ago) and was developed
> by universities, mainly within the US as a way of networking between
> facilities. The first international network was between the UK and the US.
> 
> But back specifically to that web page.......
> 
> I had a look at the web page in the internet archives (did you know that if
> you know the URL of a web page you can go back and look at old pages, as far
> back as 1996, archived on the internet) and also did a little research.
> 
> That particular page has been up since 1998 and was last updated in late
> 1999. I know its been up longer than that though, because it was one of the
> first pages I saw when I got on the net in 1996, and as I said a part of the
> reason for starting the list (which was done in 1997) and a BIG reason for
> the list web site (actually its scary to think I have been hanging out in
> cyberspace THAT long!!!) it was probably at a different URL. I could check -
> but it would take me a while to search old archives on disk here. (do you
> know how many gigs of archives there are for these lists!!)
> 
> That page actually belongs to the home page of a book - Medical Genetics -
> of which John Carey was/is an author.
> 
> I dare say thats the reason that the web site hasn't been updated. The
> promotion is for the second edition of the book - and there is now a third
> edition. The second edition is out of print so that web page is "obsolete".
> 
> Soooooooo as wary as I am of the benefits to all in doing this it may
> actually pay to compare the two books (I haven't seen the new edition) as it
> ALWAYS pays to do your research before you launch a campaign.
> 
> Then speak to the Utah SOFT folk (Debbie and Raquel) and write a snail mail
> letter to the University pointing out that the web SITE (not that page but
> the whole site) for the second edition of Medical Genetics either needs
> updating, or removing. A hint - be nice and offer suggestions of updating or
> removing don't demand) - remember the authors earn money and reputation from
> the sale of their books as does the University.
> 
> I would also cc the letter to ALL the editors, not just John and make sure
> that you inlcude who you have cc'ed the letter to in each letter. (that
> often brings pressure to bear in itself if people know that collegues are
> getting the same letter)
> 
> I would also suggest that they look at the comments made by purchasers of
> the book at places like Amazon.com. Comments such as
> "This book is extremely limited in discussing how these genetic disorders
> manifest themselves clinically. I would not recommend this book for students
> who plan to apply their knowledge in the clinical setting. Explanations of
> certain genetic terms are not always clearly defined nor are certain
> biologic processes such as meiosis. Overall, a poorly written book for
> anyone but a graduate student of genetics."
> 
> and that comments such as this one (also from Amazon)
> 
> "This book was intended to prepare medical students to understand the basic
> science principles that form the foundation of clinical genetics. It is not
> intended to be a clinical handbook. It does an excellent job showing how the
> clinical genetic diseases illustrate the scientific principles of genetics.
> I think that it is very well written, and forms a foundation to pursue more
> clinical studies."
> 
> would be beneficially added to every PAGE of any future revisions of the web
> site because parents and other non-professional people accessing the
> individual pages of the web site would not be aware that the photographs
> were designed to be of benefit to students doing further research, and
> unrealistically expect all children with the disorder to be like those in
> the photograph rather then varying ends of a spectrum.
> 
> If it were me (and its not) I might also add information (very tactfully)
> about how such photos without adequate explanation (eg the photo which
> upsets everyone) facilitate misconceptions of the population effected by the
> disorder and that such misconceptions MAY translate into internet games such
> as chromosomethingy.
> 
> If you havent seen or heard about Chromosomthingy let me know. I still have
> web shots of that horrific game which thanks to this list, its members and
> everyones connections within the disability community has been removed from
> the net.
> 
> Anyway - thats a few thoughts from me about how I would approach the
> situation if I had the time :-)) but right now I am going back to my sick
> bed cause my body hurts bad.
> 
> The roots of true achievement lie in the will to become the best that you
> can become.
> -- Harold Taylor
> 
> Keep Looking For Rainbows!!
> Karen, Mum to Alex (8 years, T-18 Mosaic)
> http://members.optushome.com.au/karens
> 
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
> 
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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