Connective Issues - Fall 2019

If you or your family member has a new diagnosis, is facing surgery, or is dealing with new health issues related to Marfan or a related condition, the Foundation’s Help & Resource Center can help. Jan Lynch, MSN, RN, director of the Help & Resource Center, works with our Professional Advisory Board, comprised of the country’s experts on Marfan and related conditions, to answer your medical questions. Susan Leshen, LCSW, handles your social work questions. You can submit your questions through our website ( and they will get back to you. You are not alone on this medical journey. We are here for you. MARK YOUR CALENDAR: REGIONAL SYMPOSIUMS Regional Symposiums are one-day events that, like the Annual Conference, feature medical presentations from experts on Marfan, vEDS, Loeys Dietz syndrome, and other genetic aortic conditions. They also provide an opportunity to meet other people from your area who are on a similar medical journey. Each symposium offers breakfast and a Creating Connections luncheon, as well as activities for your children. There is a modest fee for each symposium ($25 per person); children and teens are always free. GETTING YOUR QUESTIONS ANSWERED

WALK FOR VICTORY Connect with members of the Marfan and genetic aortic conditions community by joining a Walk for Victory in a city near you. New this year, be a virtual walker for the Walk of your choice, or join our Virtual Walk. Details at

Here is the schedule:

• October 19, 2019: Minneapolis, MN • March 28, 2020: Lexington, KY • April 25, 2020: Ann Arbor, MI • May 9, 2020: Cincinnati, OH

• May 16: 2020: Denver, CO

For complete details and to register, please visit We hope to meet you during the year!


Fall 2019

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