News and Updates Related to Loeys-Dietz Syndrome

LDSF tees: Healing Hearts, Inspiring Hope for Tomorrow

Show your support for the LDSF by purchasing our 2018-2019 tee shirts. We can't wait to see them all over the United States (and social media) this June!  Orders will start shipping April 29th!

Brandy Williams pledged to spread the love  by giving out a hug in response to anyone making at least a $5 donation to LDSF. She did this in honor of her beautiful daughter Lo who has LDS. 

Brandy engaged over 100 people to donate to our foundation which was really putting herself out there since hugs are not the most comfortable thing for her!  We saw hugs in hospitals, libraries and restaurants. You can check out Brandy's videos and pictures at https://www.facebook.com/hugsgiving.

A huge thank you and shout out to the amazing Clingerman and Donohue crew running a Move Your Feet for Loeys-Dietz in honor/memory of the Ports family! Check out their story and fundraiser. 

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.

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!

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.

At nearly three months of age, while he was still recovering from his second heart surgery in the CICU, our sweet son Connor received his diagnosis of Loeys-Dietz Syndrome. The geneticists' explanations were accompanied with a stapled, detailed print-out about the syndrome and the Loeys-Dietz Syndrome Foundation (LDSF) website address.

My relationship with the Foundation goes back to 2006 and the genetic discovery of TGFBR1 and TGFBR2 mutations causing Loeys-Dietz syndrome. Dr. Loeys and I started at Johns Hopkins somewhat around the same time; he to get more connective tissue research and clinical training with Dr. Dietz and colleagues, and me as my first job out of graduate school. I first started seeing patients clinically in general genetics clinic, then transitioned to skeletal dysplasias and connective tissue disorders. Of course, this was back in the day where we rarely ever did any genetic testing for Marfan syndrome. I liked how we could make a difference in people's lives through diagnosis, medication, lifestyle and surgical counseling.

Meet the incoming LDSF President: Dawn Reiner

I first connected with the Loeys- Dietz Syndrome Foundation when my daughter, Nicole and I attended the 2010 conference. Nicole had her LDS diagnosis for just under three years and we felt so isolated in California. Not only had we never met anyone else with the syndrome, but most of our doctors had never heard of it and there was such little information at that time. On our first night in Baltimore the day before the conference we went to PF Changs for dinner and sitting at the table in front of us was this adorable little girl who had similar features to my daughter.

Thank you to everyone who participated in our 2018 Biennial Education Conference! It was a great weekend filled with much learning, laughter, inspiration...and quite a few excellent eighties dance moves!

Meeting Members of Our Community

Hi Loeys Dietz Syndrome Community! My name is Isabella Williams. I am 17 years old and I was diagnosed with LDS type 2 at 5 by Dr. Dietz himself.