NMFconnect
Videos
Photos
Birthdays
Birthdays Today
Birthdays Tomorrow
NMF 30th Anniversary-Share Your Memories With Us
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.
Research Drive
Notes
NMFconnect "Features Overview"
Created by Jonathan Martin Apr 1, 2009 at 9:10pm. Last updated by Jonathan Martin Apr 2, 2009.
Protect Your Privacy
Created by Jonathan Martin Mar 31, 2009 at 8:16am. Last updated by Jonathan Martin Mar 31, 2009.
Notes Home
Created by Jonathan Martin Dec 16, 2008 at 5:04pm. Last updated by Chris Nadeau Dec 19, 2008.
Latest Activity
Sherry Heldt shared their event on Facebook
Sherry Heldt left a comment for Ally Smith
Hi, Ally
Welcome to Connect ~ I am so happy your have joined us here!
What a nice looking young man you have, how is he doing health wise Ally other than what you've posted in your profile. Having worked with Special Need teens for 18 years I…
Sherry Heldt left a comment for PHILLIPA
Hi, Phillipa
If your interested I did get in touch with Sue Glassey (Jonathan"s mom) from New Zealand, she gave me her e-mail address for you to get in touch with her glasseye@slingshot.co.nz. She said you are welcomed to contact her she has a…
Ally Smith updated their profile
trudy01 left a comment for Ally Smith
Hello Ally, welcome on Connect !
Paula Marshall left a comment for Heidi
Hi Heidi, sorry it has taken me SO long to reply to you. Have you had your cardiologists appointment yet? Milly is seen by Dr Jon Skinner who we really like. I think he works between Greenlane and Starship. We have also…
Forum
Post Surgery Psychosis? 4 Replies
Started by Benjamin Vivian in Uncategorized. Last reply by Robert Oswalt 23 hours ago.
Where is the best hospitals to have aortic surgery for Marfan patients ? 26 Replies
Started by Cory Scott in Uncategorized. Last reply by Sherry Heldt yesterday.
Physical Development 6 Replies
Started by Susan O'Neill-Wood in Uncategorized. Last reply by Sherry Heldt yesterday.
Wanna Ask a Question Anonymously?
If you would like to ask a question in the NMFconnect forum, but would rather remain anonymous, contact Jennifer Buffone (click on her profile in the Members section) and she will serve as your proxy.
Groups
-
Marfan Philippines
1 member
-
UK MARFOIDS
6 members
-
I have Marfan and Asperg…
2 members
-
Quality of Life Matters
1 member
-
joe curran
1 member
-
After Aorta Surgery and …
5 members
Blog Posts
In search of information
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…
Continue Our Time has come.....our son must have is aortic root repaired
We 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
Who to go to?
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
3,652 days to heaven!
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…
Continue
Finding the silver lining...
I 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
© 2012 Created by Chris Nadeau.
Powered by 
.
