Connective Issues - Winter 2020

LET’S GET TOGETHER! NEW FOR 2020 – VIRTUAL WALK FOR VICTORY We know connection is so valuable and many in our community are not able to travel to a Walk. But, “community” is not about living in a specific zip code; rather, it is a place where people feel a sense of belonging and it is frequently online. More than a dozen teams have already formed around the US in places like Idaho, West Virginia, Kentucky, Colorado, and South Carolina. International teams have already formed as well -- in Costa Rica, Canada, the UK, and Australia.

This year, teams and individuals can register for the Virtual Walk for Victory and begin encouraging friends and family to support them as we lead up to the official Walk day on Saturday, May 2, 2020! Check the details at Marfan.org/VirtualWalk or contact Senior Vice President of Development, Kim Huddleston at khuddleston@marfan.org or 516-314-5610. REGIONAL SYMPOSIUMS ϑ Portland, OR – March 14, 2020 ϑ Lexington, KY – March 28, 2020 ϑ Ann Arbor, MI – April 25, 2020 To register and get more information, head to Marfan.org/RegionalSymposiums THE INFORMATION YOU NEED – ALL ONLINE When you have questions, you want answers as soon as you can get them. For medical and quality of life information related to Marfan, VEDS, Loeys-Dietz, and other genetic aortic conditions, we’ve got you covered at Marfan.org. Virtual Symposium and Empowerment Series webinars , and their resources, can be viewed anytime from any device at marfan.org/resources/patients . Download summaries, factsheets, and listings for you or a care provider at marfan.org/resources/patients/patient-resources . Listen to medical experts answer common questions in our Q & Video Series at marfan.org/resources/patients/marfan-question . Submit a question online to our Help & Resource Center and our on-staff nurse will respond within 24 hours. Marfan.org/Ask ϑ Cincinnati, OH – May 9, 2020 ϑ Denver, CO – May 16, 2020 ϑ Atlanta, GA – June 6, 2020

The year 2020 is packed with opportunities to connect with the community and we’d love to see you! Join us for an event in a city near you this year. WALK FOR VICTORY & TEAM VEDS ϑ South Florida – February 9, 2020 ϑ Southern California – February 29, 2020 ϑ Phoenix, AZ – March 1, 2020 ϑ Houston, TX – March 7, 2020 ϑ Atlanta, GA – March 14, 2020 ϑ Cleveland, OH – March 21, 2020 ϑ Nashville, TN – April 5, 2020 ϑ North Carolina – April 18, 2020 ϑ Birmingham, AL – April 26, 2020 ϑ San Francisco, CA – May 2, 2020 ϑ Boston, MA – May 17, 2020 ϑ New York, NY – June 6, 2020 ϑ Chicago, IL – June 6, 2020 ϑ Portland, OR – June 14, 2020 ϑ Michigan – June 20, 2020 TBD: Washington, DC

*Dates and cities as of 1/9/20

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