Thanks to the outstanding support of our community members, Marfan Awareness Month and Loeys-Dietz Awareness Month touched more people than ever before, with 784K total users reached during February and March through our digital posts – which were shared about 6,000 times across both campaigns. Over 990K people saw our pages and profiles. And, more than 1,300 new followers joined the Foundation family digitally during the awareness months.
Community members had governments proclaim the awareness months in regions across the country and several landmarks were lit in our organizational colors. Internationally, we amplified messaging in partnership with global organizations serving genetic aortic and vascular conditions. Tee-shirt-design contests were part of the lighter side of awareness, with winning entries sold in our online store throughout the months.
During Marfan Awareness Month, the #PictureMe campaign (depicted in the collage image above) gave community members a platform for sharing any aspect of life alongside Marfan syndrome. By the numbers, #PictureMe was the most successful social media campaign in the history of the Foundation to date.
“When we provide members of our community with a space to share their real-life experiences in their own words and with their own images, we humanize the condition for the general public beyond a medical diagnosis. We raise awareness that people are living vibrant lives alongside Marfan syndrome. We also share the more difficult realities of the condition. Our goals are always to help more people know as early as possible that they have Marfan so they can receive appropriate medical monitoring, deepen community connections so people everywhere living with Marfan know they are not alone, and help more people thrive on their own terms,” said Foundation Chief Communications and Marketing Officer April Dawn Shinske.
Media coverage was also a cornerstone of the campaign. Marfan Awareness Month kicked off with a story in Newsweek featuring Kenosha, Johnny, Sky and Auggie Whitehead about parenting within a Marfan family. Dr. Alan Braverman spoke with Diagnostic Imaging for a medical-education story published during awareness month that will help radiologists better identify Marfan syndrome with the goal of earlier patient diagnosis.
The Foundation offered a free webinar with Dr. Mary Roman: “What You and Your Healthcare Professionals Should Know to Effectively Manage Marfan Syndrome.” A partnership with Marfan Europe Network meant we were able to offer facts about Marfan syndrome in multiple languages while also helping Marfan-support organizations around the globe the reach of our large audience.
This year, during LDS Awareness Month in March, the Loeys-Dietz Syndrome Foundation celebrated 20 years of awareness beginning when the condition was formally identified. Through first-person accounts, our “A Day in the Life” social media campaign from community members, government proclamations from around the nation, a National Health Council guest blog, and science-based resources, the Foundation community ensured more people will #KnowConnectThrive. Early diagnosis can mean game-changing medical management that vastly improves quality of life and longevity. Sensory stickers celebrating 20 years were sent around the globe to help raise awareness, with community members encouraged to place them prominently on items like laptops and water bottles as conversation starters.
The Foundation also offered a new resource: Living with Loeys-Dietz Syndrome: Answers to Your Top Questions – a compilation of questions commonly received through support groups and our Help & Resource Center. The questions cover a wide range of topics and are aimed at providing clear, reliable information to those affected by the condition. Each answer has been carefully reviewed and provided by an expert team, including Foundation Chief Science Officer Dr. Josephine Grima, Help and Resource Center Director Stephanie Amdur-Clark, LDS Division Director Stacey Watson, and Dr. Dietz.
Watson, who herself lives with LDS, emphasized the importance of awareness months in bringing rare conditions to the fore for both medical professionals and laypeople. “For me, LDS Awareness Month is a platform to come together and make our voices collectively heard. Just one person speaking in a crowd can be a quiet force —you might not be noticed. But when so many of us come together in a specific period of time, we amplify our message in bold new ways,” said Watson.
“The number of people within and outside of the Foundation family whom we were able to reach this year is a testament to the engagement of our community members. Thank you for making Marfan Awareness Month and Loeys-Dietz Awareness 2025 the most extensive and far-reaching condition-specific campaigns in Foundation history. We look forward to spreading life-saving, life-changing awareness during Aortic Dissection Awareness Week 2025 in September and VEDS Action Month 20025 in October.” added Shinske.
The Marfan Foundation is a nonprofit organization that saves lives and improves the quality of life of individuals with genetic aortic and vascular conditions including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes. Our vision is a world in which everyone with genetic aortic and vascular conditions can live their best life.