Amy Kipnis, the volunteer leader of our Legislative Action Team, has been a long-time volunteer at the Foundation’s Hill Day, bringing her family to Capitol Hill to meet with their House Representative and Senators to educate them about Marfan syndrome and the issues important to the Marfan and related conditions community.
As 2020 came to a close, Amy wanted to make a greater impact on the state level. And not only for her state, Virginia, but also for every state from coast to coast. That’s how she came up with the Proclamation Project, a national effort to secure Marfan Awareness Month proclamations nationwide.
“With the pandemic eliminating normal activities for everyone, spreading awareness in each state and among our elected officials was a high priority for me,” said Amy. “Having more people aware of Marfan can lead to more success stories and lives made better.”
Every state has different guidelines for securing proclamations, but that didn’t deter Amy. She did the research and then helped secure volunteers to request proclamations from their state. Armed with the tools that Amy created, volunteers took action in 38 states.
Despite the national and statewide focus on current events and the COVID pandemic, governors in 14 states issued Marfan Awareness Month proclamations.
“In the future, I’d like to get each and every state, territory, and tribal location in the US involved. I also hope that more people will write or email their representatives and Senators and then visit with their reps on the Hill when we can go back one day,” said Amy. “My goal is get more young people in our community involved because they are have such a strong influence. When they speak, our government listens. ”
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The volunteers who were involved in this project took great pride in their accomplishments, sharing on social media and even securing local news coverage to amplify the Marfan awareness messages.
One of our younger state volunteers, Luke Wiggins, 17, who secured the proclamation in Kentucky, told his local paper that securing the proclamation from the governor’s office is “a step in the right direction toward bringing awareness to the disease.”
In addition to his excitement when he received the proclamation in the mail, he heard from another family in his town struggling with Marfan and they were able to connect through a video call.
The Foundation’s legislative efforts continue with Virtual Hill Week from March 15-19, 2021. Through the Foundation’s new Legislative Action Center, members of the Marfan community and their family members and friends can easily contact their lawmakers to share their story and advocate for the issues that are important to the community.
Anyone who would like to be more involved in the Foundation’s legislative efforts is welcome to join the Legislative Action Team. To do so, please email us at brandcoms@marfan.org.
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.