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Healing Hearts. Inspiring Hope.
 
 
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Celebrating 15 years since the discovery of Loeys-Dietz syndrome!

Wow, how much we have grown in the past 15 years! This genetic condition that unites us all has gone from being unnamed and unknown to bringing thousands of medical professionals, families, and #LDSwarriors together. Your dedication to this community has enabled us to connect, educate, and equip people all over the world about Loeys-Dietz syndrome. We hope that as you reflect on the strides we’ve taken in the past 15 years, it gives you an even greater expectation for all that is to come in our shared future.

 
 
“Loeys-Dietz syndrome is discovered by Dr. Bart Loeys and Dr. Hal Dietz.
”
— 2006
“The National Loeys-Dietz Society is founded by a group of families whose children were recently diagnosed with Loeys-Dietz syndrome.
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— 2007
“The Loeys-Dietz Syndrome Foundation becomes a registered 501c(3) organization.

First joint sessions with the National Marfan Foundation Conference.


First Heart of Gold Award goes to Quentin Waid and family.”
— 2008
“Our Foundation gets its iconic blue heart branding.


We have our first community-initiated fundraising events.
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— 2009
“Our first conference launched with 76 attendees in Baltimore.
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— 2010
“We had our first international conference collaboration with LDSF-Canada andProf. Eloisa Arbustina of Policlinic Foundation San Matteo IRCCS, Pavia.


Our Medical Advisory Council is formed.”
— 2012
“The Loeys-Dietz syndrome diagnosis primer is published in Genetics in Medicine.
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— 2014
“Dr. Pamela Frischmeyer-Guererrio launches a longitudinal, multidisciplinary study into allergic disease and other manifestations of LDS through the National Institute of Allergy and Infectious Diseases (NIAID) at the NIH.
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— 2015
“Celebrating the Holidays with our LDS family around the world with our first International Christmas Tree.
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— 2017
“Loeys-Dietz Syndrome Foundation launches its’ first June Awareness Month!
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— 2019
“The Loeys-Dietz Syndrome Foundation becomes a division of The Marfan Foundation to better advance LDS research and offer even greater levels of support to our community.
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— 2020
 

Help Us Heal Hearts and Inspire Hope for Tomorrow


Your donation allows us to connect people, donate to live-saving research, and create partnerships around the world. We are consistently blown away by the generosity of our community.

 
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 15 Years of Stories

 
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Don’t Miss Upcoming Foundation Events: Save the Dates!
Don’t Miss Upcoming Foundation Events: Save the Dates!

No need for FOMO! The Marfan Foundation just announced a preview of its 2024 events.

Hope for a Better Future
Hope for a Better Future

By Tammy

I was diagnosed with Loeys-Dietz Syndrome in March of 2020 at 53 years old. My father died after his second open-heart surgery when he was just 32 years old.  Loeys-Dietz had not yet been identified in 1971, but the geneticist believes he suffered from the syndrome as well.

Here for a Reason
Here for a Reason

By Missy

I am one of the lucky ones... On November 19th, 2022, I was rushed to Renown Hospital in Reno, NV where I survived an emergent open repair to a ruptured 8.7 cm abdominal aortic aneurysm. I had multiple blood transfusions and coded twice over a few hours. One minute I was working and the next I woke up days later in ICU. 

Family Camp
Family Camp

By Brenda

Our family discovered our LDS diagnoses in 2015, and while we have been focused on managing our care, we have not really had the opportunity to connect with other members of the LDS community. The stars aligned for us to attend Camp Victory together this October. 

Foundation Announces $500,000 In New Research Grants
Foundation Announces $500,000 In New Research Grants

Thanks to the generosity of our supporters, the Foundation awarded five new research grants. These two-year grants include two Innovator Awards and three Victor McKusick Fellowship Awards. The research projects focus on aortic dissection and thoracic aortic aneurysms.

New Director Announced for Loeys-Dietz Syndrome Foundation
New Director Announced for Loeys-Dietz Syndrome Foundation

Stacey Watson has been selected by The Marfan Foundation to join its team as Director of the Loeys-Dietz Syndrome Foundation, a division of The Marfan Foundation. Stacey is also a member of the Loey-Dietz community.

For Healthcare Providers Watch & Share, 3 Things Every ED Pro Should Know About Aortic Emergencies
For Healthcare Providers Watch & Share, 3 Things Every ED Pro Should Know About Aortic Emergencies

In this two-minute video, Dr. Kim Eagle talks about the three things he wishes every emergency department caregiver knew about aortic emergencies. Please share with the healthcare providers in your life!

Announcing Atlanta Conference 2025, Virtual Global Conference 2024
Announcing Atlanta Conference 2025, Virtual Global Conference 2024

We are pleased to share that we recently reached an agreement to return to Atlanta for an in-person Conference July 10-13, 2025 which will again be hosted by our friends at Children’s Healthcare of Atlanta and Emory at their new medical campus.

One Test
One Test

I believe that my story is the perfect example of the power of awareness and education. Without those two things, a medical breakthrough, no matter how extraordinary, is rendered useless. My life, my daughter's, and future generations of my family will be followed by cardiologists, ensuring that aortic dissections do not suddenly and unknowingly take us away from our loved ones.

The Foundation Announces Largest Research Grant in Its History
The Foundation Announces Largest Research Grant in Its History

The Marfan Foundation has awarded its largest research grant in history, the Everest Award, as well as $600,000 in other new grants to physicians/scientists as part of its Research Grant program, bringing current total grant funding to $1,285,500. 

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3 Ways to Support the Loeys-Dietz Syndrome Foundation Online for Giving Tuesday

 
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Set Up a Facebook Fundraiser

  1. Visit facebook.com/fund/TheMarfanFoundation

  2. Edit the title of your fundraiser to let everyone know you are raising money for The Loeys-Dietz Syndrome Foundation, a division of The Marfan Foundation. This is critical!

  3. There is wording about The Marfan Foundation already entered. You can change this and personalize it so your family and friends know why the Loeys-Dietz Syndrome Foundation is meaningful for you.

  4. Select a picture to use for your fundraiser. Click here to download an image we’ve made for you!

  5. Share the link to the fundraiser on your Facebook page, tell your friends about how the cause, and watch the donations come in!

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Add a Donation Sticker to Instagram Stories

  1. In Instagram, open the camera or upload a photo that best highlights of your cause (here’s a link to one we made for you!)

  2. Tap the sticker icon.

  3. Select the donation sticker from the tray.

  4. Search for and select The Marfan Foundation.

  5. Customize the “Fundraiser Title” to include LDSF or Loeys-Dietz Syndrome so we can track your donations.

  6. Add some pizazz to your image using GIF, Music, Location, or Hashtag stickers. Make sure you tag us so we can reshare your Story.

  7. Tap Send to to publish!

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Activate AmazonSmile

  1. Sign in to smile.amazon.com.

  2. From your desktop, go to Your Account and select the option to Change your Charity. Or, from your mobile browser, select Change your Charity from the options at the bottom of the page.
    Note: You can also hover over the Supporting notice in the navigation at the top of any page, and then select the Change link next to the name of the charity you’re currently supporting.

  3. Search for “The Marfan Foundation” with a location in Port Washington NY and click “Select.”

  4. On your browser, bookmark smile.amazon.com to make it even easier to return and start your shopping at AmazonSmile. When you’re using the app, always check for the “AmazonSmile” logo to ensure you’re activated for AmazonSmile. Happy shopping!