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March 2017

 
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New Management Overview for Eye Doctors

Our new management overview for the treatment of eye issues related to Marfan syndrome is now available online. Please download it and bring it your ophthalmologist.



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More Help for our Volunteers

Please join us in welcoming Suśan (Suzhan) Sobers to the Marfan Family as our new Volunteer Director. Suśan has spent the last 25 years in the nonprofit arena and has an extensive background in board development, volunteer recruitment, and fundraising with organizations such as the USO and JDRF. She enjoys working with volunteers and we are confident she will bring her passion and commitment to excellence to our team. To reach Suśan and discuss volunteer opportunities, please contact her at ssobers@marfan.org.



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Annual Conference Coming Soon

It’s almost time to register for our 33rd Annual Conference, co-hosted by Emory Healthcare and Sibley Heart Center, August 3-6, 2017, in Atlanta. We are offering presentations and workshops for people of all ages. Whether this is your first conference or if you’ve attended before, you can learn something new and meet new friends. Watch your email in the coming days for the announcement about registration, scholarships, and patient assessments appointments. We can’t wait to see you this summer.



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2017 New York Triathlon

Each year, thousands of athletes brave the waters of the mighty Hudson River before biking along Manhattan's West Side Highway and then running through New York's famed Central Park in the final stage of this iconic race. If this sounds exciting to you, a friend, or a family member (who does not have Marfan or a related disorder), then please email Kimberly Huddleston at khuddleston@marfan.org and join us for the New York City Triathlon on July 16, 2017, as we raise money and have some fun!



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Community Events

As the winter draws to a close, what better time to get connected to the Marfan and related disorders community. This month, there are local group activities going on in Texas, Indiana, and Minnesota; the details are in community calendar. If you are near Nashville, don’t miss our regional symposium there on March 11. In addition, you can connect with community at our Walk for Victory in Houston on March 25 and in Cleveland on March 26. Check out our website to find about other Walks for Victory this spring!



 
CONTACT OUR HELP & RESOURCE CENTER

Our Help & Resource Center is available Monday-Friday 9:00 AM to 5:00 PM Eastern Time to answer your medical and social questions and help you find knowledgeable medical professionals. Contact the help center at 800-8-MARFAN (800-862-7326), ext. 126, or support@marfan.org.

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The Marfan Foundation | 22 Manhasset Avenue, Port Washington, NY
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