Connective Issues - Fall 2019

VOLUNTEERS FOR VICTORY – THAT’S YOU!

As a team member, you will be able to hear what other members are doing, get new ideas, and help build connected and vibrant communities. Experienced volunteers, along with staff partners, will support you, so you are never alone. Please visit www.marfan.org/ volunteer to learn more about the teams and see some of the exciting programs our volunteers are already doing around the country. To sign up for a team or get more information, please contact Suśan Sobers, director of volunteer engagement, at ssobers@marfan.org or at 516-883-8712, ext. 116. Heather, who is also serving as the Chair of the Volunteers for Victory pro- gram, added “For me, victory includes an active and supportive Marfan and related conditions community that my family can continue to thrive in. What is your victory? I’m a proud Volunteer for Victory Will you join me? ” .

The New Volunteers for Victory program is comprised of six teams, and you can join as many teams as you wish. Join the movement and see how you can make a huge difference in your community. • Social Media Awareness – let your online posts do the talking • Writing Group – are you a great writer – share your story and perspective • Legislative Ambassadors – tell your representatives your story – no one knows it better than you • Mentor Team – be a support system for someone else • School Nurse Champions – they are on the front line – let’s give them the tools they need • Community Action – be your community’s superhero – make a difference through awareness and fundraising of Asa Gladstein, whose organizat Squad Driven, brings together peo who have a passion for high-end c He decided to raise money for The Marfan Foundation this year becau his close friend, Dario Valli, has Ma “It was important for us to supp The Marfan Foundation because of Dario and it seemed like a great organization to partner with and ra awareness for,” said Asa. “After the first phone call, we knew a great fit.” The Foundation is so grateful to Asa, i a

Do you know who can volunteer for the Foundation? Anyone. Yep, especially you! Do you know how much time it takes? Or what special skills you might need? Whatever time and talents you have can be put to work helping build a better world for people living with Marfan, Loeys Dietz, Vascular Ehlers- Danlos, and other genetic aortic conditions. Whether you are affected directly or indirectly, there are all kinds of ways you can get involved. Heather Bergstrom, of Minnesota, member of the Foundation Board of Directors said, “As a mom of two children and a wife to a husband all living with Marfan syndrome, I wanted to do everything in my power to ensure they live a full and healthy life. As a result, I became a passionate Foundation volunteer.” And we know there are lots of members of our community who feel the same. EAST COAST RUN On July 19-20, the 2019 East Coast Run brought together 35 amazing cars, driven by 35 unique and respectable drivers, for a weekend of adventurous driving and events from Boston to Philadelphia to Richmond. For the first time, The Marfan Foundation was chosen as the beneficiary. Thanks to the generosity of the drivers, nearly $20,000 was raised for the Foundation. The East Coast Run is the brainchild

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the future!

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Fall 2019