[tri-med] Thesis Project Question

i told molly i would ask this group who might participate.  i will as it is 
a chance to educate more professionals about our kids.
can someone forward this to wings too?

anyone who had a prenatal diagnosis and decided to go to term can you please 
email me, jfwolpert@xxxxxxxxxxx , the following info if you might be 
interested in participating?
diagnosis
what country or state you got the diagnosis in
living or angel child

jude, mom to derek-18, kelsey-16
and kameron-7-full t18
golden, colorado usa
http://judewolpert.com
http://home.comcast.net/~jfwolpert2
______________________________________________________________________________

>> Jude,
>>
>>
>>          I am a first year student in the masters program for genetic 
>> counseling at the University of South Carolina, and for our program we 
>> complete a thesis project. My thesis advisor suggested your name as 
>> someone who might be interested in what I am doing and may be able to 
>> help. She gave me a letter from you from 1999(with your daughter's 
>> adorable picture on it!), so I don't know if you are still the chapter 
>> chairperson, but this was the most recent information she had.
>>           Anyway, I am studying the needs of mothers who have a prenatal 
>> diagnosis of Trisomy 18 or 13 and choose to continue the pregnancy. The 
>> goal of the study is to find out ways that genetic counselors can better 
>> serve this very unique group of women. Right now, genetic counselors tend 
>> to treat them in the same way as other conditions such as Down Syndrome 
>> during their care and counseling sessions, but there are obviously some 
>> very different informational and emotional needs that I think are 
>> important to identify and make available to genetic counselors and 
>> possible other health professionals.
>>            I was just planning on using women in a few centers in South 
>> Carolina, but this is such a small sample size that I was hoping to find 
>> a way to interview more women who are in this situation. With that, I was 
>> wondering if you had any thoughts on a way to contact more people 
>> affected with Trisomy 18 or 13 perhaps either through support groups or a 
>> contact at the SOFT organization that could perhaps allow me to present 
>> the idea to families who could then volunteer to allow me to interview 
>> them or survey them.
>>            If you have any other thoughts, suggestions, or ideas, I would 
>> always welcome them as well! I am really excited about this project and 
>> very much hoping for it to work out becuase I would love to be able to 
>> support these families better as a genetic counselor.
>>
>> Thank you very much.
>>
>> Sincerely,
>>
>> Molly Dixon
>> USC genetic counseling student
>>
>> 

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

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