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Inspiring Hope for Tomorrow


The Loeys-Dietz Syndrome Foundation 2018 Annual Report

 
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The last couple of years has been an incredible time of growth for the Loeys-Dietz Syndrome Foundation. With more awareness, literature, and education, people from all over the world are getting the proper diagnosis at a much faster and more accurate rate. It has been heartwarming to see how thousands of people are connecting on a regular basis through our social media, monthly newsletters, biennial conference and local communities. As our community grows, so does the foundation. We now attract the top doctors and researchers in their field who have knowledge and an interest in connective tissue disorders. We work closely with these professionals by providing research grants, fact sheets on the most up-to-date learning, and presentations on the latest research. On our LDSF YouTube channel, our Medical Advisory Board, as well as at our conferences, we showcase the latest clinical observations. 

With everyone’s help, the LDSF is working towards Healing Hearts and Inspiring Hope for Tomorrow. 

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Dawn Reiner

President, Loeys-Dietz Syndrome Foundation

 

In 2018 we supported our mission of encouraging education, fostering research and providing a supportive network in a number of ways.

 
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 Education

 
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Formed an educational committee

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Authored two “Did you Know” factsheets on GI issues and ongoing headaches

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Engaged twenty physicians, scientists and therapist on the latest research and information regarding Loeys-Dietz at our conference


 
Our goal as the foundation is to educate communities, to educate medical professionals too, so they are equipped to give a diagnosis that can save someone’s life.
— Gretchen MacCarrick, Vice President
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Connection

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Held our fifth biennial conference in Baltimore, MD with 215 people from nine different countries

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Gathered on a cold day in December to trim the twelve-foot LDSF Christmas tree with homemade ornaments of pictures of our LDS warriors and angels.

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Actively shared personal stories on our social media


 
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I attended my first Loeys-Dietz Syndrome Foundation Conference in June 2014. I didn’t really know what to expect but was looking forward to meeting some of the friends that I had ‘met’ online. What a weekend it turned out to be! For me, it was probably the first time in my then 34 years, that I truly felt accepted and understood. I had no need to explain anything to anyone. I felt part of a family, and that IS what we are, a family.
— Rachel
 

Research

A $100,000 grant was given to Dr. Pamela Frischmeye-Guerrerio MD, PHD and her lab at The National Institute of Health to investigate the mechanisms by which altered TGF-B signaling leads to allergic disease in Loeys-Dietz Syndrome.


This is a very exciting time in Loeys-Dietz research. We have great tools. We have wonderful investigators who are dedicating their careers to this condition. We have wonderful young people who have been attracted to the field. We have made great progress, but we have a long way to go. We want to know all of the manifestations of the disease so we can better predict the future and use participant management principles. Instead of waiting for a problem we want to be able to prevent problems from happening.
— Dr. Hal Dietz
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Heart of Gold Award


The Kasper family was awarded the 2018 Heart of Gold Award.

Through their generous donation, Johns Hopkins University and the NIH are joining forces to advance the learning on the current LDS population by establishing a registry and honing in on specific mutations as well as other connected characteristics. The Kaspers’ grant will do wonders for the advancement of research for the Loeys-Dietz Syndrome community. 

 
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Make a donation to support the Loeys-Dietz Syndrome Foundation.

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