Skip to main content

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:

http://www.surveymonkey.com/s/CFsocialmediasurvey

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!

Comments

Post a Comment

Popular posts from this blog

End of Summer -Updates!

Wow, I can't believe it's been a year since we moved our blog to www.MoreThanDNA.org! A lot has happened in that year. My husband and I became Foster Parents to some amazing kiddos and still have one of those kiddos living with us. We have loved having "Shoes" with us and can't believe how much he has grown and learned in the year!I'm so proud of him! We have court next week, so prayers that it goes okay (and doesn't get continued again- that just drags it out longer for the kids). He is now 39 months old and starting Pre-K this month! Other big changes include: Some renovation to our home (complete Bath rehab & updated plumbing throughout), I started a new gene-targeting medication (symdeko) that is helping to keep me stable these last 3 months, and I got an AffloVest! I'm loving my new portable vest! Also, career wise...we both switched jobs! Andrew also started Seminary this summer to get a Masters Degree in Divinity. He has always wanted to be ...
6 comments
Read more

Why I Hope this Hospital Stay is Different

Typically, I've been very stable as an adult. I'm very lucky for that stability. However, 2018 started out nowhere near where I wanted. I was admitted mid March for a virus. We aren't sure what virus I had (every test came back negative). However, I had a consistent fever over 102 the entire 5 days I was in the hospital. Once I was fever free for 24 hours and I started eating better, they let me return home. I was excited to leave and get back to my everyday life. But, considering now a month later (and re-admitted), I think I should of just done a two week tune-up last month while I was in already. Live and learn. As you know (I'm sure) I have been trying to get my lung function back up to around 55-60%. 60% is my goal and it really is the highest my lung function can get, due to all the permanent scarring. I started Orkambi in October 2016. At that time it was the newest gene-modifier drug on market for CF patients (with my mutations).  After going on Orkambi I droppe...
2 comments
Read more

How Fostering and CF impact my work

I haven't been on my blog much.... I think that is because most of my blogging is currently been done on Health Union's Cystic-Fibrosis.com (here is link to all my posts on their site: https://cystic-fibrosis.com/members/cherizkunkel/ ). I decided last fall to step away from real estate after 3 years in the business. It was tough to say good-bye, especially since I had tripled my volume and business in the last year. However, I didn't have time to add any new clients; I kept saying, maybe next week, next month I can fit more work into my schedule. The truth is fostering takes a lot of time. We have between 5-8 monthly visits at the agency, 1 court ate a month, 2 home visits from the caseworker a month, plus e have 2-3 doctors/specialist appointments for our current kiddo. We have lots of paperwork we fill out, gas mile logs, receipts to add, and more! Our kiddo also participates in gymnastics and dance two nights a week. We go to a fosterparent support group with our kid ...
2 comments
Read more