Dear CF Families and Friends,



I am sending this to you in case you or someone you know may be interested.



The Department of Disability and Human Development at the University of
Illinois, Chicago , is conducting a research study on the experiences of
individuals with genetic disabilities. Spina bifida, cystic fibrosis, Down
syndrome are examples of the conditions they are studying.



This study is specifically seeking to interview minority groups with cystic
fibrosis or their carrier parents. The study involves a one-hour phone
interview. It is open to adults with CF or carrier parents who are from an
under-represented racial, ethnic or cultural minority group, from anywhere in
the USA . A racial,ethnic or cultural minority group includes those from African
American, Asian, Latino, Native American or Orthodox Jewish background. In the
event of a biracial couple, preference is given to interview the non-Caucasian
parent. Compensation may be available up to $100.



The goal of this research project is to examine the ways that prenatal screening
and advising is (or is not) informed by the lived experience and views of
persons with related disabilities. It is believed that the information resulting
from this project will contribute to genetic advising that is:

· more accurate in the information conveyed about genetic disabilities
and their consequences, and less reinforcing of stereotypes and biases regarding
the disability experience

· more responsive to the expressed needs of families for
experience-based information about life with genetic disabilities, and

· more supportive of a fuller range of options in genetic
decision-making.



If you are interested in this study, please contact Carol Gill, at the Univ of
Illinois, Chicago, NOT LATER THAN AUGUST 1, 2009.

Email: cg16@...

Phone: 312-996-1508



Thank you for your consideration!
ANA STENZEL, MS

Genetic Counselor

CF adult