Connective Issues Spring/Summer 2025

Community members told their stories for the #PictureMe campaign on social media

Early diagnosis can mean game-changing medical management that vastly improves quality of life and longevity, and thanks to the outstanding support of our community members, Marfan Awareness Month in February and Loeys Dietz Awareness Month in March touched more people than ever before. We reached 784K total users during those months through our digital posts—which were shared approximately 6,000 times across both campaigns. More than 990K people saw our pages and profiles, and more than 1,300 new followers joined the Foundation family digitally during the campaigns. Joining the effort, 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. T-shirt design contests were part of the lighter side of awareness, with winning entries sold in our online store. View our shop at bonfire.com/store/marfanfoundation. Marfan and Loeys-Dietz Awareness Months Reach 990K

Marfan Awareness Month Highlights During Marfan Awareness Month, the #PictureMe campaign gave community members a platform to share any aspect of life alongside Marfan syndrome. Media coverage was also a cornerstone of the campaign. Marfan Awareness Month kicked off with a story in Newsweek featuring the Whitehead family centering on parenting and Marfan syndrome. In addition, a free webinar helped attendees navigate what healthcare professionals should know to effectively manage Marfan syndrome. And a partnership with Marfan Europe Network meant we were able to offer facts about Marfan syndrome in multiple languages

Loeys-Dietz Awareness Month Highlights During LDS Awareness

Month, the Loeys-Dietz Syndrome Foundation (LDSF) 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

 The Morales family received a proclamation declaring March LDS Awareness Month

National Health Council guest blog, and science-based resources (read about the new LDS FAQs on page 11), the Foundation community ensured more people will #KnowConnectThrive. Free 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 and a reminder to embrace the moment.

while also aiding Marfan support organizations around the globe.

Read the Whitehead’s feature in Newsweek

The number of people within and outside of the Foundation family reached this year is a testament to the engagement of our community members. Thank you for making Marfan Awareness Month and Loeys-Dietz Awareness Month 2025 the most extensive and far-reaching condition-specific campaigns in Foundation history!

3

Spring/Summer 2025