Matters of Heart: August 2019

Thanks to everyone for making our first Loeys-Dietz Awareness month a HUGE success!

This June, we had virtual walks and runs, we had swag giveaways, we had FB sharing of LDS facts and photos, we had "Inspiring Hope" tee shirts everywhere....we had Loeys-Dietz AWARENESS, and it was awesome! Thanks to everyone who participated in this event! If you are interested in helping to plan out 2020 Awareness month, please email us at info@loeysdietz.org.

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NewslettersJulie Wilson
Matters of Heart: June 2019

In honor of the Loeys-Dietz Syndrome Awareness Month, the Williams family has graciously set up a $100,000 MATCHING fund to raise money for LDS cardiovascular research and education!

This means for every dollar that is donated up to $100,000, the Williams family will match it, dollar for dollar!

Want to help us #takeheart this LDS Awareness Month? Join us in creating hope by donating at:

http://loeysdietz.wedid.it/campaigns/6393

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Matters of Heart: May 2019

June is right around the corner, which means we're getting ready to kick off Loeys-Dietz Syndrome Awareness Month. Join us in our first event, a Move Your Feet Virtual Run!

Register to run or walk a virtual 5k anywhere and anytime you want to support our cause. All participants will

receive a symbolic heart medal, and 100% of the proceeds will go to the Loeys-Dietz Syndrome Foundation!

Interested in getting involved? Invite some friends and get moving!

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Matters of Heart: March 2019

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.

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Matters of Heart: January 2019

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.

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Matters of Heart: November 2018

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.

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NewslettersLauren Atherton
Matters of Heart: October 2018

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.

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Matters of Heart: September 2018

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.

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NewslettersLauren Atherton
Matters of Heart: August 2018

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.

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