The results are in: during Marfan and Loeys-Dietz Awareness Months 2006, the “Hello My Name Is” and MORE campaigns enabled community members to share their lived experiences in their own words. Medical and wellbeing content was shared throughout both months, and more than $10,000 was raised during days of giving. Community-designed t-shirts and merchandise were top sellers in our store, and a Rare Revolution Magazine takeover—along with features in the North Carolina Health and Human Services blog and newsletter—expanded visibility.
Digital reach remained a key component. In February, post interactions increased 70% YOY, and we gained 716 followers. Our posts had 987,417 impressions reaching 527,235 people. Our Marfan syndrome signs posts in English and Spanish were viewed more than 273K times by 173,000 people, surpassing our 100K goal. During LDS Awareness Month, posts were seen 954,057 times by 195,580 people, and we gained 404 new followers.
Memorial “candle days” in each month offered meaningful opportunities to honor those lost and drove strong community engagement.
Community members garnered proclamations in their home regions – with local governments shining a light on genetic aortic conditions.
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.