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Eastern Iowa/Western Illinois and Surrounding Areas (Heartland) Network Group
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Back to Chapter and Network Home Page Meet our Network Group Leader 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 Information Contact:
Marsha Jones Phone:
(319) 461-4228 E-mail:
iowamarf@hotmail.com Description of the Group 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: - To provide members support and connections with other people either affected by, or with an interest in Marfan syndrome and related disorders.
- To promote awareness and education on Marfan syndrome in the region.
- To work with our neighboring chapters in making a difference through educational, awareness and fundraising activities.
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
Aug 29 - Presentatin to Des Moines University medical students about Marfan Syndrome
Aug 30 - Run/Walk, parade / basket auction
Oct 18 - Maze for Marfan - enjoyed fire pits, hayrides and a maze while raising funds
April 26 - We enjoyed a presentation by medical professionals in the area of pediatric ophthalmology and orthodontics. We also asked them a few adult questions. An echo tech also joined us and explained what they look for when they know a person has Marfan and where measurements should be taken.
May 1 - RENT performed at the Paramount Theater in Cedar Rapids. We were given the chance to set up an awareness table and take a donation following. Situated near the front door of the theater and beside the RENT sales table we were in a prime location to contact almost everyone coming in. We handed out many flyers about Jonathan Larson and got the chance to talk to a few people who had never heard of Marfan, or only had only heard it in reference to Jonathan. The curtain call must be very good as we had people looking for us to give us donations and even saw some tears as people realized how serious Marfan can be if undiagnosed. Thanks to those who took time to volunteer and made this a success! Announcements Coming Soon!  
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