Thanks to the heartfelt and diverse ways in which our community members shared their everyday “real” alongside life with Marfan syndrome last February, the Foundation’s marketing and communications efforts were recognized on September 27 at the Ragan Communications/PR Daily Non-Profit Communications Awards. Our Marfan Awareness Month 2024 campaign won honors for social media and re-engagement strategy, and an honorable mention for innovation.
Foundation Technical Content Manager Dominga Noe, who helped shape the campaign’s theme initially and built the related dedicated web page, accepted the social media award on behalf of both the Foundation and the Marfan community.
“The biggest lesson I learned from this campaign is that our community wants so much to be heard and they have so much to share. It is our job and honor to protect those stories and help our community be truly seen,” said Dominga who lives with Marfan syndrome.
In a statement regarding the winning entries, PR Daily said, “The Marfan Foundation’s refreshed approach to Marfan Awareness Month (MAM) achieved remarkable results for the organization, winning it PR Daily’s Nonprofit Communications in the Campaigns and Communications category for both Re-engagement Strategy and Social Media Campaign…the Foundation’s MarComm team reimagined MAM to align with its …brand focus on inclusivity and community empowerment. This year’s campaign aimed to increase reach, enhance engagement and empower diverse voices within the Marfan community.”
“A key element of the campaign was the #marfanrealreels initiative, which invited community members to share personal videos depicting their experiences with Marfan syndrome…this authentic storytelling approach resonated widely,” said PR Daily.
“The Foundation also created shareable infographics, helping over 63,000 people recognize the signs of Marfan syndrome. These resources were made available in English and Spanish, with life-saving information offered in 25 languages. The overall campaign reached 417,000 people and generated 753,000 impressions, demonstrating a significant expansion in awareness. Through these innovative strategies, The Marfan Foundation successfully re-engaged its audience, strengthened its online community, and made a meaningful impact by spreading awareness. Congratulations to The Marfan Foundation team including April Dawn Shinske, Susan Benvenuti, Dominga Noe and Mary Kate Baskerville on their well-deserved recognition!” said PR Daily.
“During Marfan Awareness Month, and every day, it is our MarCom team’s honor to uplift the voices of our community. The best way to tell authentic stories that inspire action is to ask the experts — in the case of the Foundation, our community members are outstanding experts with diverse lived experiences and incredibly powerful stories. Likewise, educating everyone on the signs of Marfan syndrome through materials like infographics that go viral helps save and improve lives in alignment with our mission. Susan’s work to share Know the Signs globally made a transformative impact. We are grateful to PR Daily, Ragan Communications, and most of all to our community!” said the Foundation’s Chief Communications and Marketing Officer April Dawn Shinske. “I am so proud of the MarCom team and every staff person at the Foundation who helped make Marfan Awareness Month a success.”
The Marfan Awareness Month campaign was highlighted before an audience of non-profit marketing communications leaders from around the nation and the world during the awards celebration. The recognition also means the Foundation’s Marfan Awareness Month campaign win will be featured on Ragan’s websites Ragan.com and PRDaily.com, on their social platforms and in their e newsletters – which reach more than 250,000 communicators and marketers.
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.