matters of heart

december 2018   
Prevalence & Impact of 
Bullying and  Cyberbullying 
in LDS

**We need at least 50-100 surveys returned to do this research and are currently at about 12 responses. Please help us answer more QOL questions about LDS and take time over Christmas break to answer survey.

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)

THANK YOU to all our generous donors who gave as part of our #GivingTuesday campaign! We are so excited to have met our $35,000 match.  Please continue to consider LDSF for end-of-year giving.  


LDS Tree-trimming in Chicago!

Nikki  Kasper h as worked tirelessly to gather photos and locations of those affected by LDS from all over the world. Each photo became an ornament and was hung on the Loeys-Dietz tree in the Brookfield Zoo which is located in a suburb of Chicago. Thirty-five people came out for the tree trimming event. The amazing photos warmed everyone from the inside out making the cold weather a non issue. If you are in the area in December stop by and see the beautiful tree! (For Loeys-Dietz families FB page members, make sure to check out all the LDS warriors from around the world! 



In this newsletter, we've covered RESEARCH and COMMUNITY. Stay tuned at the end of this month for EDUCATION and release of our conference videos. Thanks for a GREAT year, LDS family!