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:

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Looking for an easy way to get you and your friends involved? Consider 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 to the Loeys-Dietz Syndrome Foundation! Check out the link for registration.

We love all the ways you are raising awareness this June!

Thanks for all the fun photos and posts! Make sure to follow, like and share our posts on FB!

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Annual Report! Looking back...

Take a look back at the awesome things the Foundation accomplished in 2018 in our annual report! We are so proud and grateful of everyone who helped make 2018 an awesome year.

And, looking to the future....

The BOD recently met for their annual strategic planning session. We are very excited to be dreaming and planning BIG! On a personal note, I (Gretchen) am so honored, excited and encouraged by the hardworking group of BOD volunteers who make the Foundation run! What an amazing group of women, advocates, mama-bears for all our LDS warriors!

And yes, the future does include....A NEW WEBSITE!! Thanks for all your patience over the last week. Unfortunately, our website got massively hacked. Luckily, we are 90% of the way finished with a fabulous new website, so are investing our precious time and resources to get that posted as soon as possible!

Many people were interested in the Emergency cards that were posted on our 6/13 (Thursday) Awareness FB post. Here is the PDF for emergency card and youtube instructions!