Hi my name is Brenna and I am a genetic counseling student from the University of Oklahoma. I am currently working on a research project as part of my degree. My interest in Duchenne muscular dystrophy comes from my own family history. Both of my uncles were affected by DMD and my mother is a carrier. I never had the opportunity to meet my uncles but the stories from my mother are inspirational. Before I was born, I was tested for carrier status and was found not to be a carrier but my sister is. I know how we as a family have discussed testing and what the future may look like for our family but I am interested in how other families respond to this issue. Through my research I hope to understand more about how other families think and go about carrier testing. I have attached my informational flyer to this message. If you are interested or know anyone who may be interested in participating please feel free to pass it along.

Here is the link to the survey: https://ouhsc.qualtrics.com/SE/?SID=SV_8c3EdZuv8qyFkUJ

Thank you for your time,

Brenna Mellicker

Views: 237

Reply to This

Replies to This Discussion

Hi, I clicked on the link and it’s saying the survey has ended. If it hasn’t I’d love you participate in this study. my mother is a positive carrier and my brother had Duchenne’s. I have never been tested but I’m willing to now. 


Please let me know. 

Thx, Nicole Ammons

Why doesn't PPMD have the Eteplirsen Petition as the main banner on the website and Twitter.  

This Petition on the Whitehouse.gov website started by Charley's Fund is of critical importance at the moment.  Eteplirsen the exon-skipping drug by Sarepta is real and works and must be approved.  For the month PPMD must do everything to support this.   Why hasn't this been done with all PPMD resources.

https://petitions.whitehouse.gov/petition/urge-fda-say-yes-accelera...

People start demanding it now!  If the Petition reaches 100,000 signatures the Whitehouse(the Obama administration) has committed to responding.   We need this Petition to happen and reach 100, 000

Reply to Discussion

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service