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April 2019

eNews April2019
Annual Conference is Almost Here!

The Foundation's 35th Annual Conference is just around the corner and we have some great plans in place to make this conference better than all the rest! Please come to Houston, July 11-14, to learn from the experts and connect with our community. You can expect it to be life-changing for every member of your family. We offer special programs for young adults, teens, and children (your kids won't want to leave!). New this year are a special track for vEDS and Loeys Dietz syndrome. Remember the upcoming deadline: April 15 for conference scholarships and health fair appointments. More information is available on our website. Register today!

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Free Webinar for Marfan, LDS, & vEDS: April 9

Our webinar series, Prepare for Victory: Virtual Medical Symposiums, continues with a presentation on Children's Heart Issues in Marfan, Vascular Ehlers Danlos, and Loeys Dietz Syndromes on Tuesday, April 9, at 7 PM Eastern. Dr. Ron Lacro, a member of our Professional Advisory Board from Boston Children's Hospital, will give the presentation and answer your questions. Registration is FREE. If you are interested but unable to watch live, register anyway so you can be among the first to get the link to the recording. Additional webinars are planned for both our Virtual Medical Symposium Series and our Empowerment Series (quality of life topics). Check them out and register today! 

Fling Into Spring Special Events!

It's going to be an incredible Spring with activities for our community from coast-to-coast! Two Evening with Heart events are coming up - in Chicago (April 11) and Boston (June 20), along with our Heartworks Gala in New York City (June 11). Walks for Victory continue with our community coming together for this fun, family friendly event in Southern California (April 13), Washington, DC (April 27), Minnesota (May 18), Milwaukee (May 19), Portland, OR (May 19), Boston (June 2), New York City (June 15), and San Francisco (June 22). And our one-day Regional Symposiums come to Baltimore (May 4), Seattle (June 1), and Miami Beach (June 22). Don't miss out on an opportunity to connect with community when we come to your area! 

Spots Still Available for NYC Marathon

Is there are a runner in your life who wants to show their love and support for someone with Marfan or a related condition? We have a few hard-to-get slots still available in the 2019 TCS New York City Marathon (November 3)! While competitive running is not recommended for people with Marfan and related conditions, your unaffected family members or friends are invited to join our Team Victory! Each runner pays their own bib fee and there's a fundraising requirement -- but we provide guidance throughout to help you meet your goal. Know someone who is interested? Contact Deborah Goodman at dgoodman@marfan.org.

Hop On These Physical Activity Guildlines
Spring is in the air and that means a lot more outside activity for all of us! Remember, exercise is good for everyone, but there are some guidelines to follow if you have Marfan or a related condition. Competitive and contact sports are not for our community, but there's plenty you can do. Our Physical Activity Guidelines, created by our Professional Advisory Board of experts on these conditions, explain their recommendations and what they worry about. Please note that these are general guidelines. You should discuss what's safe for you with your personal physician. If you have questions about our guidelines or any other medical questions, you can always submit a question to 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 submit your question online.

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