Connective Issues Spring 2024


became “a mom on a mission,” advocating for education and research for rare diseases. “It was something that I could do--an action that I could take--at a time when I felt desperate to make things better for my children,” she said. Colleen and Seth met with Senator Ted Budd’s o ffi ce, North Carolina. “I discussed the importance of voting to increase funding and the impact Marfan syndrome has had on our family,” said Colleen. “I had a chance to explain how increased education and research can improve lives and positively impact the cost of care delivered.” Seth’s mission was to discuss with his representative the economic and community benefits that are tied to funding for rare disease research. “I was able to explain how proactive treatment can

Capitol Hill Advocacy Days Making their voices heard is one way members of our community can feel empowered through volunteering with the Foundation. Recently, Virtual Capitol Hill Advocacy Days held April 9-11 presented a

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meaningful chance for people with genetic aortic and vascular conditions to a ff ect change. “Advocating for education and research is key and the number of voices matters,” said participant Colleen whose two children, Seth and Analise, have a Marfan variant. After attending a training webinar,

educe large/surprise medical costs on families as well as how access to dequate treatment can even serve to help individuals reenter the workforce,” he said. “Both of these serve to reduce he strain on the local economy as well s state and federal social programs.” Colleen stressed continued e ff orts hrough emails and phone calls are an mportant follow-up as well as raising for Marfan syndrome and related a h h th a th im

Colleen, Seth, and 29 other community members met directly with 37 congressio sta ff members to share stories, discuss issues important to them, and encourage support of policies that maya ff ect healthcare and research. An experienced advocate from the Health and Medicine Counsel led each session. Working in public health as a clinician, Colleen felt frustrated by the unknowns and lack of empirical evidence, leading her to contact the Foundation for resources and organize a local Marfan group. She onal

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conditions with media and on social media. “We may not always recognize how policy shapes our lives, but the truth of the matter is that it can make a worldof di ff erence,” said Seth. “It is our responsibility to educate our policymakers on our community's needs. Like with any movement, our voices become stronger, louder, and clearer the more people we have involved in advocacy. If there is some change you want to see in the world, do not be afraid to say it out loud, and work to make it happen!”

Want to learn ways to be involved like spreading awareness and advocacy? Visit .


Spring 2024

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