Help us spread Loeys-Dietz syndrome awareness every day in March!
This March, we’re celebrating 20 years since Loeys-Dietz Syndrome was first identified! Join us as we raise awareness, share stories, and support those affected. Together, we honor two decades of progress and continue advocating for the LDS community.
Below you will find activities, resources, and events hosted by The Loeys-Dietz Syndrome Foundation, as well as The Marfan Foundation. Click on the links below to jump to that section on this page!
We’ve created a series of coloring sheets and a word search to keep the LDS fun going at home. Be sure to post pictures of your final creations and tag #loeysdietz to be featured!
Download graphics, create your own profile picture, and more with these ready-made resources!
Congratulations to the adult and child community artwork contest winners. Their unique, creative designs are featured on select LDS Awareness Month merchandise.
Simply complete the form and we'll mail you a FREE LDS sensory sticker!
Note: Stickers are subject to availability and while supplies last. Limit 1 request per household.
Mobilize for LDS Awareness day of giving!
Share this graphic and link (https://give.marfan.org/give/658380/#!/donation/checkout)
with your network to help raise money for Loeys-Dietz syndrome research and programs.
Sharing Your Story Raises Awareness
Your journey with Loeys-Dietz Syndrome is powerful—and sharing it can inspire, educate, and bring our community closer together. This LDS Awareness Month, we invite you to share your experience to help raise awareness and support others on a similar path.
Awareness & Advocacy
Awareness of Loeys-Dietz syndrome leads to early diagnosis, treatment, and an extended lifespan. The most powerful way we can raise awareness is through you, our volunteers! Your circles of relatives, friends, co-workers, and neighbors, your knowledge, your personal journey, and your commitment cannot be matched by anyone outside of our community.
Community Driven Proclamations
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March is dedicated to raising awareness about Loeys-Dietz Syndrome. Throughout the month, we focus on educating the public, advocating for critical research, and supporting those affected by LDS. By fostering understanding, promoting early diagnosis, and encouraging medical advancements, we aim to improve outcomes and quality of life for individuals and families impacted by this condition.
Together, we can drive change and raise the critical funds needed to make a lasting difference.
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Join the effort to make a difference! Help raise awareness for Loeys-Dietz Syndrome by asking your state and local government to proclaim March as Loeys-Dietz Awareness Month. This simple action can save lives by promoting early diagnosis, supporting patients and families, and educating healthcare professionals about this rare and serious condition. Together, we can foster understanding, encourage research, and create a more informed and compassionate community. Take action today—your voice matters!
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We love hearing your stories of courage and sharing them with other members of our community so they can be encouraged.
Connect with LDS Community
Whether you’re newly diagnosed with Loeys-Dietz syndrome or are a long-standing member of our community, we have many different ways to connect online and help you navigate your journey with LDS.
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Whether we walk together in person or virtually around our own neighborhoods, we walk to bring awareness and support to the LDSF mission. See where we’ll be next and join Team LDS (or create your own team) at Marfan.org/Walk.
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Virtual support groups are a great way to connect with others in the Loeys-Dietz and related conditions communities. Groups meet once a month through Zoom. You can access the meetings through a desktop, laptop, tablet, or phone. Registration is free and required.
Education & Research
Learn more about the condition so you can add your voice and amplify our mission! Education and research are a huge part of our mission and we thank all our community who participate in research to further our knowledge about LDS.
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There’s a lot of confusing language around connective tissue disorders, and even more when it comes to Loeys-Dietz syndrome. Genetic counselor, Gretchen MacCarrick, MS, CGC has put together this helpful document that covers common medical terms and phrases.
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There is still much to learn about Loeys-Dietz Syndrome. We hope that you find these articles, fact sheets, and links as a place to start and helpful in your LDS journey.
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From personal perspectives to surgery series and medical symposiums, our archive of webinars is filled with resources to help you begin or continue your journey with Loeys-Dietz syndrome.
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Advances in medical and surgical care are continually being made to help decrease complications for those impacted by LDS. Check out our website for the latest medical research and articles being published and shared by healthcare professionals around the world.
Help Spread Loeys-Dietz Syndrome Awareness on Social Media!
Awareness of Loeys-Dietz syndrome leads to early diagnosis, treatment, and an extended lifespan. The most powerful way we can raise awareness is through you, our volunteers! Your circles of relatives, friends, co-workers, and neighbors, your knowledge, your personal journey, and your commitment cannot be matched by anyone outside of our community.
In addition to sharing information from our social media accounts, you can create your own to increase awareness. We invite you to join in promoting #LoeysDietz awareness on social media!
Ideas for Social Media
If you have a Facebook profile, make sure you “like” the Loeys-Dietz Syndrome Foundation page at https://www.facebook.com/loeysdietz and https://www.instagram.com/loeysdietz so that our posts appear in your news feed.
Comment and share our posts, pictures, and videos, especially during Loeys-Dietz Syndrome Awareness Month.
Create your own posts with links to LoeysDietz.org to educate your personal networks about Loeys-Dietz syndrome. Use our hashtag #LoeysDietz in all your posts for easy tracking. Tell your story, explain why Loeys-Dietz syndrome (LDS) awareness is important to you, and promote the facts. Encourage your Facebook friends to share your posts to multiply your impact.
Post photos and share what you’re doing for LDS Awareness Month on our Facebook page.
If you are not on Facebook or Instagram, now is a good time to join! Create a profile (for free) on facebook.com or instagram.com. Then “friend” or “like” people you know (friends, relatives, neighbors) to create your personal network before March begins. Then, when you post about LDS awareness, you will be sharing information with a large, and growing, group of people.
Awareness Graphics
Facebook Cover & Email Images
Profile Picture
Factoids
Factoid Text
You can use a translator to generate statements in another language:
Loeys-Dietz syndrome is a lifelong genetic aortic and vascular condition that impacts the body’s connective tissue.
Loeys-Dietz syndrome affects every individual living with the condition differently, including variations within families.
Loeys-Dietz syndrome is a unique condition related to Marfan syndrome. Many traits are shared between these conditions.
Loeys-Dietz often affects the connective tissue in the heart, blood vessels, bones, joints, and skin.
Each child of a person living with Loeys-Dietz syndrome has a 50% chance of inheriting the gene variant.
Aortic aneurysms are the most commonly seen type in Loeys-Dietz Syndrome, but aneurysms can form in other arteries.
Loeys-Dietz syndrome can predispose people to inflammatory conditions like asthma, eczema, and food and environmental allergies.
People living with Loeys-Dietz syndrome may experience hypermobility: joints they can move beyond typical range.
Loeys-Dietz syndrome often affects the eyes: including nearsightedness, retinal detachment, and eye muscle weakness.
Loeys-Dietz syndrome can impact a person’s feet, sometimes causing “flat feet” or club feet”.
Connective tissue provides strength and flexibility to bones, ligaments, muscles and blood vessels. Loeys-Dietz syndrome can impact all.
People living with Loeys-Dietz syndrome may experience hearing loss.
People with Loeys-Dietz syndrome experience dural ectasia, the widening of a membrane surrounding the spinal cord, at a higher rate than the general population.
Many people with Loeys-Dietz Syndrome encounter dental issues, such as an abnormal palate, malocclusion (improper bite), and enamel defects.
Craniosynostosis, the premature fusion of bones in the skull, can be found in people living with Loeys-Dietz syndrome.
Some people with Loeys-Dietz syndrome have restricted joint movement called contractures.
Loeys-Dietz syndrome can cause spinal issues, including scoliosis, dural ectasia, cerebral spinal fluid leaks, and cervical spine instability.
Many people living with Loeys-Dietz syndrome have soft, “velvety” and translucent skin.
People living with Loeys-Dietz syndrome may find that they bruise easily or have abnormal scarring.
Tortuous blood vessels are often found in people with Loeys-Dietz. Did you know that this trait was the inspiration for our logo?
More Sample Posts
Note: If you include a photo of yourself or a family member, you can gain more response!
Loeys-Dietz syndrome isn’t always inherited. Sometimes it can come from a spontaneous mutation. Go to loeysdietz.org to learn more. #loeysdietz
Parents don’t always pass on the Loeys-Dietz syndrome gene variant to their children. Learn more about why at loeysdietz.org. #loeysdietz
It’s really all about the genes when it comes to Loeys-Dietz syndrome. Find out more about the gene variant at loeysdietz.org. #loeysdietz
Because Loeys-Dietz syndrome affects connective tissue, it can affect what activities and exercises someone with LDS can do. Learn more at loeysdietz.org. #loeysdietz
Loeys-Dietz syndrome can really affect the entire body since connective tissue is found throughout the body. Learn how by going to loeysdietz.org. #loeysdietz
Just like no two people are the same, no two Loeys-Dietz syndromes are the same. Read stories about people’s different experiences with LDS by going to loeysdietz.org. #loeysdietz
Did you know that there are conditions related to Loeys-Dietz syndrome? Learn about them by going to loeysdietz.org. #loeysdietz
These are just the unique characteristics of Loeys-Dietz syndrome. Find out about other characteristics by going to loeysdietz.org. #loeysdietz
Loeys-Dietz syndrome can affect the body in so many ways. Go to loeysdietz.org to learn more. #loeysdietz
Hypermobility is one of the reasons why some people with Loeys-Dietz syndrome have to limit their activities. Learn more at loeysdietz.org. #loeysdietz
Aneurysms can happen at anytime and anywhere in people with Loeys-Dietz syndrome. Find out more at loeysdietz.org. #loeysdietz
You can sometimes see the signs of Loeys-Dietz syndrome in the eyes. Learn why that is at loeysdietz.org. #loeysdietz
Want to walk in the footsteps of someone with Loeys-Dietz syndrome? Then learn about their feet at loeysdietz.org. #loeysdietz
Giving & Fundraisers
Help raise funds for education, research, and support initiatives for the Loeys-Dietz Syndrome Foundation so that we can provide more hope and life-saving awareness to families affected by this genetic condition.
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Loeys-Dietz Awareness Day of Giving is on March 12! Help us continue our important work by inviting your friends and family to join you, or donating directly online.
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The Marfan Foundation hosts many fundraising events from coast to coast throughout the year to raise awareness of Marfan syndrome and related conditions like Loeys-Dietz syndrome to raise critical funds that support our work. Our events include formal Heartworks Galas, family-friendly Walks for Victory, online cocktail hours, and local events arranged by volunteer leaders. Each and every event is important and helps us further our mission.
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Loeys-Dietz syndrome members have undertaken a wide variety of events from bowling nights to happy hours to bake sales and potlucks. There’s no end to the opportunities and creativity!