Connect Issues Winter 2021

The Marfan Foundation is increasing its outreach north of the U.S. border based on the feedback from our Marfan, Loeys- Dietz, and VEDS community in Canada. More than 150 Canadians attended our International E 3 Summit over the summer. They expressed gratitude for the comprehensive educational presentations we offered as well as the numerous networking opportunities. Through the Summit app, they were able to connect with community from throughout Canada and all over the world. Kevin Kroeker, of British Columbia, who was diagnosed with Loeys-Dietz syndrome in 2018, stressed the importance of connecting with the Marfan and LDS community. “People with LDS answered the many questions that my wife and I had after I was diagnosed. They are incredibly supportive of each other through the highs and lows and uncertainties,” said Kevin. “I couldn’t have made it through this amazing journey of discovery without the support of The Marfan Foundation and Loeys Dietz Syndrome Foundation.” (The Loeys-Dietz Syndrome Foundation is now a division of The Marfan Foundation). The Foundation is extending its outreach in Canada with the first-ever Canada Walk for Victory, a virtual event scheduled for May 8, 2021. Through this virtual event, people from Canada, from coast to coast, can get together for a common cause. Whether they have Marfan, LDS, or VEDS, they can get involved with the community and create connections that can help them on their medical journey. Kevin is our LDS Community Chair, Monique Voorn, of Ontario, is our Marfan Community Chair, and Lindsay Hopp, of Alberta, is our VEDS Community Chair. “I’m thrilled to be the VEDS Walk Chair to be a good support for fellow VEDS friends,” said Lindsay who was diagnosed with VEDS at the age of nine. “I also want to cultivate more awareness of this disease and be able to help others.” “The Marfan Foundation is the best resource for information and access to experts who treat Marfan syndrome,” said Monique, who was diagnosed with Marfan at the age of 18. “Through the Canada Walk for Victory, I would like to increase awareness of the Foundation among Canadians so they know that this amazing resource is here for them.” Kevin, who has taken advantage of the many webinars the Foundation has offered, is grateful that the Foundation has been able to provide answers to his questions. Most importantly, he says, the Foundation and the connections it provides inspire hope. “Through the Canada Walk for Victory, I want to raise awareness of Marfan, LDS, and VEDS within Canada,” said Kevin. “I also want to raise money to support this great cause.” To register for the Canada Walk for Victory, visit Marfan.org/ WalkCanada . Participants will receive the same incentives as all other Walk participants to thank them for their fundraising efforts. The Canada Walk for Victory is one of 26 Walks for Victory scheduled between March through June 2021. Please visit Marfan.org/Walk to find a Walk near you. COMMITMENT TO CANADA

p Kevin and his wife, Jena.

p Lindsay, with her husband Logan, children Hardin and Farrah, and their dog, Beau.

p Monique with her husband Luc.

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Winter 2021