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June 2017

Conference Registration on Record-Setting Pace

The 2017 Annual Conference is going to be our largest ever – don’t miss out on this life-changing opportunity. Meet new friends, connect with leading doctors, learn from the experts, and get empowered! The Annual Conference is August 3-6 in Atlanta. Register online today! #CreatingConnections2017

Conference Registrants Can Walk for Victory

Our Second Annual Conference Walk for Victory is on August 4, in Atlanta. If you are one of the hundreds of people who have registered for the Conference, you can go to our Conference Walk page and set up your personal page today! Walking is always optional at our Walks for Victory. All that’s required is that you come and have fun! Funds raised go towards our life-saving programs and services so it’s a win-win for all! Need help? Contact Kim Huddleston at khuddleston@marfan.org.

Phone Support Groups

Did you know that the Foundation offers phone support groups? It’s the next best thing to being there! Jan Lynch, MSN, RN, runs the 50+ support group, which meets on the third Friday of every month, at 3 pm Eastern Time. To participate, email jlynch@marfan.org. Susan Leshen, LCSW, runs the GenX phone support group for people age 30-50 on the first Thursday of every month at 5 pm Eastern Time. To participate, email sleshen@marfan.org. A new phone support group is forming on Coping with Pain. If you’d like to participate, please contact Susan at sleshen@marfan.org.

New Spanish Q & A Video Series

Now available on video in Spanish: Basic questions about Marfan and related disorders with answers provided by Dr. Juan Bowen, a member of our Professional Advisory Board who is director of the Marfan Clinic at Mayo Clinic, Rochester, MN. The videos, which complement our Spanish language fact sheets, are available through our website.

Community Calendar

We offer many opportunities across the country to connect with community! June is a big month for our Walk for Victory, with New York (June 10) and Boston (June 11) competing for the Northeast Victory Cup! There’s also the Minnesota Chapter’s Social (June 3), the Northern Illinois Chapter’s 24th Annual Memorial Walk (June 4), and Indana Community Group Meeting (June 24). Check the community calendar for details and other upcoming events.


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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