matters of heart

november 2018   
Prevalence & Impact of 
Bullying and  Cyberbullying 
in LDS
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)

Thanks to all our generous donors now and in advance of #GivingTuesday! Check out some of our great community!

  • Kudos to Alli's Pals for organizing such a great event that supports the LDSF and our mission.  Ali and her friend, Jaymie, ran the  Monster Dash 5k in Unity Village, MO  on Oct 27th and ran a Crowdrise campaign to raise funds!

  • Thanks to the Gee family and their community in Commerce, Georgia. They held a 'Poor Man's Supper' with pinto beans and all the fixins' on Oct 20th. The raised more than $2500 to support LDS research in memory of Justin Gee who passed away at 26 due to complications of LDS. 

  • Thanks to everyone who have purchased some wonderful goods through Mixed Bag Designs! Keep up that Christmas shopping! 40% of all online sales to The LDSF from now until December 23rd! There will be a $25 raffle for everyone who participates!

  -Be sure you are supporting The Loeys-Dietz Syndrome Foundation ID# 791474
-Shop, shop, shop away (all purchases will be shipped directly to your address
-Invite friends and family to shop Mixed Bags Designs for a great cause



As you are considering #GivingTuesday and/or end-of-year giving, considering helping out with a Peer-to-Peer campaign!
The Loeys-Dietz Syndrome Foundation provides hope to individuals, parents and families affected by LDS. By making a generous #GivingTuesday gift you help the foundation attain its mission of fostering research, encouraging education and providing a support network. This year a generous donor will match all gifts up to $35,000 which translates to $70,000 for our foundation! Thank you for helping us Heal Hearts and Inspire Hope for Tomorrow.

*** Also, sign up to be a 
recurring donor  under the #GivingTuesday 
campaign  and we will send you a beautiful Loeys-Dietz heart tree ornament!

#GivingTuesday (giving link)




It's that time of the year again! Getting ready to "trim the tree!" 

Thanks to the Kasper family in Chicago for raising awareness about Loeys-Dietz syndrome with an LDS tree at the Brookfield Zoo. Check out the Loeys-Dietz families page on Faceboook for contact information and instructions to have your photos on this special tree!  

If you are in the area, join in the fun of decorating and building community on Dec 2nd, 11:00 am (tentative time)


Events to check out!

   2018 Heritable Aortic Disorders Symposium
Location: Toronto, Canada
Dates: Nov 30-Dec 1, 2018
-The first day is for physicians/trainees, 2nd day for patients/ families
-Final program and registration details: