Matters of Heart: January 2019

RESEARCH OPPORTUNITY: Prevalence & Impact of Bullying and Cyberbullying in LDS

***We have about 35 surveys, thus need at least 15 more to be able to look at the results***

Researchers at Johns Hopkins Medicine are interested in learning about the experience with bullying and cyberbullying (online bullying) in the Loeys-Dietz syndrome population.

Bullying and cyberbulling are reported in approximately 21% and 34% of the general population. We are trying to understand if these numbers may be different in those affected with Loeys-Dietz syndrome.

We are inviting adolescents between the ages of 12-18 years AND their parent/guardian to participate in an online survey about this topic. This survey must be filled out together and in one sitting.

The questionnaire involves questions about demographics, bullying, cyberbullying and resilience scales, as well as an opportunity to give your points of view on this topic. It should take about 20-40 minutes.

Choosing to complete the survey is your choice. Your answers will be anonymous and confidential (no one will know your personal information or how you answered the questions). You will not get paid for participating in this survey, but at the end you can choose to submit your email address for the chance to win a $25 Amazon gift card.

Thank you for your consideration! More survey information, contact information for the study team and fact sheet on bullying can be found at link below. (Print information)

Study Link:

LDSF Did you know? survey 

We know gastrointestinal (GI) complications can be a big problem for some of our  adult LDS community. Please take about 10 minutes to answer a few basic questions (and if you don't have GI issues, please also click on the link and choose "no!")

Adult GI survey

Genetic alliance.png


Genetic Alliance would like to understand how genetic testing and understanding family health history can improve health. Can you answer this very brief survey? (Literally one minute!) 

Feel free to pass it on!

A tremendous  THANK YOU!  to all our incredible and generous donors. It's through your support that we are able to meet our goal to support research.