| What Is Marfan
Syndrome?
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| Marfan syndrome is
a genetic disorder that was first described by the French doctor Bernard
J. A. Marfan in 1896. It affects many organ systems, including the eyes,
skeleton, lungs, heart and blood vessels.
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| Fundraising | |||
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The Heart of Iowa Chapter of the NMF carries out the mission of the National Marfan Foundation throughout Iowa. The group educates doctors, emergency department personnel, coaches, school nurses, athletic directors and the general public about Marfan syndrome so that everyone with this disorder receives the best care available. As an example, we’ve been able to present the real life stories of people living with Marfan syndrome and the everyday struggles to first and second year medical students, as well as podiatry students, physical therapy students and physician assistant students. We have been able to bring kids together who have never seen another person with Marfan syndrome. These connections have brought comfort and life-saving knowledge to people that would not have received this otherwise. Kids get to meet other kids and finally feel “the same as everyone else” at the conferences. This is our 10 year anniversary of the Have Heart for Marfan Walk Fun/Run. Our goal this year is to raise $10,000 ($5,000 on this page) – a $1,000 for each year that we have held this event. These funds will support research, scholarships for families to attend the National conference, Education and Awareness and Support. Please make your 100% tax deductible donation in whatever denomination you can to help save a life. Please click on the firstgiving logo to the left to donate!
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Recipes from the Heart Cookbook |
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This recipe book features nearly 700 mouth-watering recipes from around the world. Books cost $20 plus $2.50 S & H. All proceeds will go to the Heart of Iowa Chapter of the NMF Conference Scholarship Fund. |
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| Archived Newsletters |
| Heart Happenings | Spring 2009 Newsletter | |
| Heart Happenings | Winter 2009 Newsletter | |
| Heart Happenings | Winter 2008 Newsletter | |
| Heart Happenings | Summer 2007 Newsletter | |
| Heart Happenings | Winter 2006 Newsletter | Pictures from past events |
| Heart Happenings | Fall 2006 Newsletter | |
| Heart Happenings | Summer 2006 Newsletter | |
| Past Event Information |
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January 29, 2011 -- Drink For a Cure |
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| Des Moines University | ||
| Articles |
| Woman's Day 2007 | Article featuring Haley Dostalik |
| Health Questionnaire | Research questionnaire about the musculoskeletal issues experienced by those with Marfan Syndrome |
| Links |
| National Marfan Foundation | Official website for National Marfan Foundation |
| Marfan Life | Jeanette Navia's website about life with Marfan Syndrome |
| Contact Us |
| Teri Dean | President | (515) 263-1948 or (515) 371-5633 |