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Research-CFers let's help out

Research: CFers lets help out!

I was contacted to help encourage and find participants (CF patients) to take a survey for a Grad Student in South Carolina. Here is what she writes:


Hello,

My name is Margo Faust and I am currently a second year student in the genetic counseling program at the University of South Carolina School of Medicine.

As a part of my Masters’ thesis, I am conducting research on the use of social media by adults with cystic fibrosis as a support network.

Like many of you, I use social media in my everyday life and find it to be an integral part of the online community today. I am interested in seeing how adults with CF such as you use social media to gather information and support about CF.

I would like to invite you to participate in an online survey about your use of social media. This survey should take around 10-15 minutes to complete. At the end of the survey, you will be given the option to provide your contact information for a follow-up phone interview at your convenience. I would love the opportunity to talk with you briefly about the specific ways in which you find social media helpful in your day-to-day life.

To complete this survey please click the link below:


Thank you for your time and consideration to participate in this survey. Your responses may help genetic counselors understand if adult CF patients seek emotional support and what online sites patients use. If you have any questions regarding this research, you may contact either myself or my faculty advisor, Andrea Sellers, MS, CGC, using the contact information below.

Margo Faust                                                               
Genetic Counselor Candidate                                                
University of South Carolina School of Medicine                  
USC Genetic Counseling Program                                         
Two Medical Park, Suite 208                                     
Columbia, SC 29203                                                   
margofaust@gmail.com                                                        


Andrea Sellers, MS, CGC
Faculty Advisor
University of South Carolina School of Medicine
USC Genetic Counseling Program
 
Two Medical Park, Suite 208
 
Columbia, SC 29203
Andrea.Sellers@uscmed.sc.edu

Just like her, I am also starting to do CF research. I will not be sending out any surveys for a while though. I'm still in the developing stage. I understand the importance of having a large sample to gather information from. 

So if you have CF please consider taking her survey and sharing it with other CFers!

Let's advocate for each other and help the CF awareness grow! Also, if you are interested to know more about other research being done check out http://www.cff.org/research/

Thanks everyone,
Cheriz

ps. Getting excited for Saturday's CF Walk!

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