Connective Issues Spring 2024

COMMUNITY IGNITES Marfan Awareness Month ES

In February, our Marfan community came together to share what they wanted the world to know about day-to-day life with Marfan syndrome, including through personal videos called #marfanrealreels that energized Marfan Awareness Month. These authentic stories about diverse experiences, spanning various topics and languages, resonated across the globe and were widely shared across our social platforms. One such video, shared by KeNosha Whitehead, featured her daughter Sky’s surgical journey and generated more than 8,000 views. “My four-year-old had her first Marfan syndrome related surgery,” detailed Nosha as her video

highlighted her daughter’s meeting with the doctor. “It was quite a recovery - surgical pins, walking boots, and pain meds - oh my. But witnessing her grit and resilience throughout the process was one of my deepest inspirations this year.” Beyond our #marfanrealreels, thanks to our community’s dedication, more than 63K (and growing) individuals learned to recognize the signs of Marfan syndrome through our informative infographics available in English and Spanish on marfan.org, which also provided life-saving resources in 25 languages. Throughout the month, our online community welcomed nearly 800 new social media followers, and we reached 417K people, generating over 753K impressions, predominantly driven by the #marfanrealreels outreach campaign. Our awareness month also encouraged our community’s creative side by featuring a t-shirt contest showcasing their artwork, with winning designs becoming popular additions to our online store. Additionally, Marfan Awareness Month received recognition in hometowns and states across America through community members receiving proclamations as well as on the National Health Council blog. As we look back on Marfan Awareness Month, we celebrate the collective e ff orts that propelled our mission forward. Together, with our community, we’ve expanded awareness, fostered inclusivity and acceptance, and made an impact.

More than 30 #marfanrealreels videos were submitted during Marfan Awareness

Month. Youcan watch them on our social media channels or view themonour YouTube channel.

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Spring 2024