Connective Issues Winter 2019


The Marfan Foundation hosts regional symposiums on Marfan syndrome and related conditions around the country to provide education, support, and networking opportunities for individuals and families. The symposiums also enable participants to meet local doctors who are experts on these conditions. For many attendees, the regional symposium is the first time they meet doctors who are experienced and up-to-date on Marfan syndrome and related conditions. For many attendees, the regional symposium is the first time they meet other people with the same diagnosis that they have. REGIONAL SYmPOSIUmS bringing education and support to communities nationwide

EMPOWERMENT SERIES IN 2019 our Marfan Syndrome and

related Conditions empowerment Series continues in 2019 with three webinars that can help you improve your quality of life. January 22, 8 PM Eastern roanne weisman, MSw, (below) and barbara Kivowitz will give a presentation on relationships and chronic conditions. The two will share information and tips from the book they co-authored, Love in the time of Chronic illness . roanne herself has Marfan syndrome.

First Southern California Regional Symposium registration is now open for our first Southern California regional Symposium on Marfan Syndrome and related Conditions on February 23. Among the featured speakers is dr. robbin Cohen, a cardiothoracic surgeon who is the medical director of the uSC genetic Aortic & related disorders Center, Keck Medical Center of uSC.

“we are proud to host the first Southern California regional Symposium and to welcome attendees to our Keck/uSC Medical Center Campus,” said dr. Cohen. “our one day program is designed to educate and promote wellness when it comes to Marfan syndrome and related conditions. we look forward to sharing our expertise, as well as hearing the stories and recognizing the needs of the Southern California community.” Topics to be covered are: • what’s new in the genetics of Marfan and related Conditions • eyes in Connective Tissue Conditions • bones & Joints in Connective Tissue Conditions • Aortic Complications & Aortic Surveillance • Aortic Surgical options for patients with Marfan Syndrome and related Conditions • reproductive planning, Talking about the diagnosis, Transition of Care There will be opportunities to ask questions of the expert presenters and to connect with other attendees who have Marfan and related conditions. in addition, we offer a fun, age-appropriate program for children, ages 5–12, that will include arts & crafts, games, movies, and a chance to make new friends. Children will be supervised by professional staff. The cost to register is $30 per person. registration is free for children, teens, and medical students. breakfast and lunch are included. register at . dr. robbin CoHen • The Affordable Care Act and pre-existing Conditions • An emergency Transport network for Aortic Care • wellness & Meditation

March 14, 8 PM Eastern Taylor beecroft, MS, CgC, genetic counselor at Texas Children’s Hospital, will give a presentation on the role of genetic counselors and how they can help you navigate your medical journey. May 22, 8 PM Eastern Melissa Flint, psyd, Midwestern university, will give a presentation about how to cope with depression, anxiety, and anger. registration for our webinars is free, thanks to the generosity of the Chu and Chan Foundation. Simply visit the empowerment Series on our website and click on the registra- tion link. All webinars are recorded and can be viewed at a later date.

Save the Date Additional regional symposiums are being planned for 2019, including in Baltimore on May 4 and Seattle on June 1. For more information, visit

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