Called the genetics office today in hopes of getting an appt. sooner than our current April 24 one...fingers crossed!
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I Heart the NMF Teen Challenge
Take the Challenge-Take Charge!
The NMF is launching the I [heart] the NMF Teen Challenge to give young people an opportunity to prove they have what it takes to take charge of NMF teen programs… by raising money and awareness on a very adult level.
Here’s the challenge: raise $28,000 by August 1, 2012, and NMF BFF Chris Heaney will donate another $28,000. That means double the money for NMF programs that help children, teens, adults and entire families!
Need another incentive? We’ve got one: the three teens who raise the most money will win these awesome prizes:
1st prize Kindle Fire
2nd prize Nintendo 3DS in Flame Red
3rd prize Apple ipod Nano 16 GB
To learn more about how you can get involved click here.
New Children's Book
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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Latest Activity
trudy01 commented on trudy01's group 'Les Francophones entre nous'
pas de quoi Sabine !
Si il est trop tranquille ici, mieux visitez Belgique -
http://www.marfan.be/forum/ ;
trudy01 left a comment for Yeyey Moreno-Rufon
Well, it's good that there's clever people that discover all these things like medication, echoscans. Also, it is clever people that accept the fact they need medication on a regular base and keep their blood pressure down.
Good luck with…
trudy01 left a comment for deseria levesconte
Good on you Deseria, but, why MarfanS, anybody in your family with it ?
Is that a police uniform I detect ?
There's a group on Connect for Canada, Valerie is the one who set it up. Look at groups in the lower part of the top bar.
Good…
Yeyey Moreno-Rufon left a comment for Joker
hi joker! love your profile info.. :D i suffer from positivism too (but am not complaining!) I'm a 38-year-ol bacolodnon marf at malala na ako (yung pagka lukaret ko i mean :D) Am currently hoping to be the first filipino Marf to successfully…
Yeyey Moreno-Rufon left a comment for Yeyey Moreno-Rufon
Hi guys.. just an update.. I am currently 36 weeks pregnant and scheduled for a CS delivery nxt week, Feb. 8. My aortic root was 4.5 cm 7 months ago and its now down to 4.2cm accdg to my 2d echo yesterday! I'm very very happy and my cardio said…
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massage therapy? 6 Replies
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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.
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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 — 6 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
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