matters of heart

december 2014    


December is always a good time to reflect on the year that's passed. Thanks to your generous support, we have lots to celebrate at the LDSF, including: 


Publishing the first medical guidelines for Loeys-Dietz syndrome, providing patients and caretakers a valuable resource summarizing the best available evidence on managing LDS. 


Convening the 2014 Conference in Baltimore, where 73 families from 7 countries benefited from medical updates by leading experts on LDS and opportunities to simply connect with each other, sharing the space we have in common with Loeys-Dietz syndrome. 

Launching work towards the Loeys-Dietz registry, which will provide a unique resource for researchers to continue exploring ways to improve how we manage the manifestations of LDS for improved quality of life. 


Doubling the size of our Board of Directors, engaging more talents and energy that have already helped strengthen how we work as a Foundation in advancing our mission. 


Expert presentations on Loeys-Dietz syndrome 
We're delighted to share with you the medical presentations from our 2014 Conference through online videos. Go here to watch: 

An overview of Loeys-Dietz syndrome 
by Dr. Sarah Bowdin, geneticist from The Hospital for Sick Children in Toronto 

Current research into Loeys-Dietz syndrome and other related conditions by Dr. Hal Dietz, Geneticist/Cardiologist from Johns Hopkins University 

Management of skeletal features of Loeys-Dietz syndrome by Dr. Paul Sponseller, Pediatric Orthopedist from Johns Hopkins University 

Management and current research of the allergic and gastrointestinal manifestations of Loeys-Dietz syndrome by Dr. Pamela Frischmeyer-Guerrerio and Dr. Anthony Guerrerio, Allergist and Immunologist at the National Institute of Allergy and Immune Disease at the NIH, and Pediatric Gastroenterologist at the Johns Hopkins Medical Center, respectively
by Dr. James Black, Vascular Surgeon from Johns Hopkins University


Loeys-Dietz syndrome vocabulary and concepts by Gretchen MacCarrick,Genetic Counselor at Johns Hopkins University




The gift that keeps on giving! 

Giving to the LDSF is a meaningful way to celebrate the important people in your life during the holidays. Using JustGive, you can designate your donation as a gift to someone special and easily send them a personalized JustGive postcard. 


(Gifts made through midnight of December 31 are tax-deductible for 2014) 


Share your favorite holiday recipe 

There are so many ways to celebrate the holidays, but they all have one thing in common: food, food & more food! With that in mind, we're putting together an updated LDSF cookbook. So please send us your favorite recipe (and a photo of the completed dish, if possible) by the end of January to We will be putting them all together and making the cookbook available afterwards. 


Happy Holidays from everyone at the LDSF!


Thanks to your generous contributions to our end-of-year campaign, we have past the halfway mark to our goal of $20,000!

We're grateful for your precious time and resourcefulness through fundraisers, your outreach to family and friends, and your generous direct contributions throughout the year. Your generosity encourages us to keep working hard to advance our mission of encouraging education, fostering research, and providing support, always aiming to make living with Loeys-Dietz a bit easier.  

Welzoo, AmazonSmile & Bravelets

Surfing the internet? Ordering off Amazon? Looking for some unique jewelry? Did you know you can help generate funds for the LDSF with things you already do? Take a moment to see how you can help us raise funds everyday. Learn how to help the LDSF.


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