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Eastern Iowa/Western Illinois and Surrounding Areas (Heartland) Network Group
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Marsha Jones first learned of Marfan Syndrome after an aortic rupture shortly before her thirtieth birthday. In a rural area when this happened, she was fortunate to make it to a hospital with skilled surgeons and technological advances that saved her life, even though she and the medical staff had limited knowledge of Marfan syndrome. Marsha is now committed to raising Marfan awareness so other people will not have to go through the emergency experience alone. Marsha grew up with many of the typical skeletal symptoms of Marfan. She has subsequently learned that her eyes also are affected enough that an ophthalmologist familiar with Marfan could have diagnosed Marfan syndrome. Since that time she has searched to connect with local people affected by the syndrome. When the Heart of Iowa support group began meeting again in Des Moines, she attended as many meetings as she could. As a chapter the group started having a yearly meeting in the eastern side of the state, sparking Marsha's interest in having more accessible meetings. Marsha is currently a board member on the Heart of Iowa chapter also and looks forward to productive interaction between networks and chapters.Contact: Phone: E-mail: The Eastern Iowa and surrounding areas NMF Network Group serves members in eastern Iowa and western Illinois centering around the Mississippi River. Our goals are:
All activities are held in handicap accessible locations and with an area (sometimes activity) for children and youth. Dates of Future Meetings and Events Coming Soon! Recent Activities 2008: July 12 - Heartland Marfan Network Group Picnic Coming Soon!
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