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New Children's Book, Marfan Does Not Mean Martian, Now Available In Print
Marfan Does Not Mean Martian is an inspirational story about Marvin, a boy diagnosed with Marfan syndrome, and the friendship he builds with his new neighbor Joe. The story educates children about Marfan syndrome while teaching them about diversity and acceptance.This new resource was written by Elias Turner and illustrated by Alexandra Dubow. Elias was diagnosed with Marfan syndrome in pre-school. He wrote this book as a project for his biology class. This book is appropriate for children ages 8 to 12. Families with affected children can receive their free printed copy by clicking here. View the online version of Marfan Does Not Mean Martian.

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My son is 17 years old. He has been recently diagnosed with a mildly enlarged aortic root and mvp. We have been to the eye doctor and genetics, his eyes were fine and the genetics doctor said they while he met some of the criteria for a marfan's syndrome diagnosis he didn't meet enough. My son is junior in high school and plays basketball and baseball. His only limitations are no football, no catching for baseball, no weightlifting, no exercising to exhaustion. The genetics doctor said that…
ContinueWe are devasted but have faith all will go well. We would like to hear of anyone who has already had this experience. If they have any tips for before, during and after surgery. Our son is at university waiting for the arrangements to be done, he is 19 and not much of a talker but he seems to have accepted that it must happen. We want to go to John Hopkins for Dr Cameron, we will be traveling from Florida. Tips on accomodations would also be appreciated. We are awaiting word from our…
ContinuePosted by roseline hartmann on January 16, 2012 at 12:05am — 4 Comments
We find ourselves being singled out because of what we have,
We single ourselves out because we feel as thou no one understands us
We sometimes ignore the positive sides and focus on the negative
We belittle ourselves in fear of dissapoionting others and not meeting up to anyone's…
ContinuePosted by daiana jean louis on January 14, 2012 at 5:32pm — 2 Comments
When i told my family regarding the result of the medical examination (that i have a marfan syndrome), i felt their sadness. I even saw my mother cried many times. She keep on telling me that they will send me for medical operation (for my eyes and for my sunken chest). But through the net, we found out that it will cost 30,000 to 50,000 US dollars for the sunken chest operation not including the plane tickets cost, stay accommodation and other expenses we may incur since there are no…
ContinueI am a woman possessed! It's good to have a mission. I have been researching Prolotherapy A LOT lately since it is my glimmer of hope for treating all of the pain issues I've been having lately. I've been in contact with Congressman Jim McDermott's office since I have Tricare Insurance and it will take an act of congress to get prolotherapy covered...
I'm not giving up. I have found so much information on the ehlers-danlos network and been in contact with people that have…
ContinuePosted by Alicia Helene Atkins on December 8, 2011 at 4:58pm
February 4, 2012 from 2pm to 4pm – Monroe-Meyer Institute
February 17, 2012 at 10am to February 23, 2012 at 7pm – Starts in big lake, Alaska
April 28, 2012 from 9am to 12pm – Panera Bread