Connective Issues Winter 2023

Your Voice Can Impact Change

After spending 18 years in Washington, including many on Capitol Hill, Tyler Roberts volunteers his time to help those in the connective tissue condition community better engage with members of Congress to get their voices heard to enact change. A former House and Senate healthcare sta ff er, lobbyist, and now public a ff airs professional, Tyler knows the ins and outs of Washington and provided insight on how to best advocate to elected o ffi cials. Tyler, who has Stickler syndrome, first connected to The Marfan Foundation at the Senate bu ff et line right before the pandemic.

with your elected o ffi cials to advocate on behalf of our community. “It’s important to make sure your faces are seen and voices are heard to enact change in DC,” said Tyler. Tyler provided his top three tips when communicating with an elected o ffi cial: 1. Don’t Be Afraid: Many people are nervous or apprehensive at first, but there is no reason to be. Tell your truth and understand it is a conversation. 2. Tell Your Story: Members of Congress

always love anecdotes and hearing from their constituents. Be sure to cite specifics and speak from the heart; don’t talk too broadly – make it personal. 3. Be Persistent: Don’t think “one and done.” It takes time to make change and establish trust so start a dialog, build a relationship, stay engaged, and follow up. That is what members of Congress are here for – to hear from constituents. “I think many people see DC as this weird bubble and not part of their life,” Tyler said. “Congress is for the people. It was created so

“By happenstance, I saw a group from The Marfan Foundation there for Congressional Lobby Day, and I struck up a conversation,” said Tyler. “After that, I became involved with the Foundation to help with strategy and fundraising.” Since the first meeting, Tyler

has participated in two Walk for Victory fundraising events in DC. He was also a guest speaker at the Foundation’s International E 3 Virtual Summit in 2020 where he shared his story about Stickler syndrome and his experiences with four detached retinas and countless eye surgeries. “Sticker has impacted my life, and I want to remain engaged with the Foundation to help inform the community,” stated Tyler. “It is important to visit members of Congress and tell your story to advocate for the Foundation to better increase research and funding. Treatment options and outcomes can be impacted through Congress.” As Congress reopens more to the masses since COVID, Tyler encourages those who want to become engaged to make appointments at local o ffi ces with members of Congress or their sta ff . You can also start a letter-writing campaign to start developing a relationship with them. If you will be in Washington DC, you can arrange to meet

“DC is a great place to engage and advocate, so don’t be afraid to jump in. Voice can impact change.” here, but what most people don’t realize is there is so much good that comes out of DC, and there is so much bipartisanship that is not covered in the media. Advancing funding for rare conditions is always bipartisan and important .” The Foundation will keep you up-to-date throughout the year on any legislation a ff ecting our community. If you need more advice on engaging DC o ffi cials, please reach out to Tyler Roberts directly at atyroberts@gmail.com. we can come out and petition our legislators to help guide them on the issues. DC is scary and there is so much ugly politics out

We encourage community members to reach out to their elected o ffi cials to proclaim February as Marfan Awareness Month in each state. Scan the QR code now to get started!

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