Musings of a Marfan Mom

Please Help the NMF Win $250!

| 292 Comments

Regular readers know that the National Marfan Foundation (NMF) is a cause very close to my heart. I’ve learned about the opportunity to help them win $250 and I’m hoping you will take a moment out of your day to help me do that.

For those of you not familiar with the NMF, they are the only nonprofit in the United States dedicated to people with Marfan syndrome (a life-threatening connective tissue disorder) and related disorders. They provide support for affected people and their loved ones, educational materials for medical professionals, and fund research initiatives.

I attended their annual conference as a teen and it changed my life. I know I’ve said it a lot, but the opportunity to spend time with other kids my age and to see adults living well with Marfan syndrome completely changed my outlook on life. Now, I am honored to be a volunteer with the NMF. I see how the conference programming continues to give children, teens, and young adults self-confidence, how the free clinic there provides diagnoses and medical information to people who would not have access to it otherwise. The research the NMF funds is literally saving the lives of children and adults affected by Marfan and related disorders and giving hope for the possibility of a life without the worry of sudden death due to aortic dissections.

We’ve come a long way since I was diagnosed almost 19 years ago, but there is still a lot of work to be done.

The company Moments in Frames is offering two blogs the opportunity to earn up to $250 for the charity of their choice. The two blogs with the most comments will be the winners, and they’ll each receive $1 per comment, up to $250. Please help me raise this money for the National Marfan Foundation by taking a moment to leave a comment! I’d appreciate if you could spread the word about this post to your family and friends as well. Only one comment per person, please. The contest ends May 6th (I think at 11:59 pm EST).

Thank you!

Disclaimer: I am participating in a blogging promotion sponsored by Moments in Frames to help raise money for the National Marfan Foundation.  Please help us reach our goal by leaving a comment.  Each comment you leave me could earn $1 (up to $250) for the National Marfan Foundation

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292 Comments

  1. Good luck. I’m always excited to help a fellow APO brother helping out a good cause.

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  2. The NMF was very helpful to me when I was pursuing a diagnosis. I hope they get the money!

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  3. I know how near and dear to your hear the NMF is to you and so many of your friends. I’m so proud of the way you’ve used your voice to educate, encourage and inspire others. I hope this helps you meet your fundraising goal! :)

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  4. Great foundation!

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  5. I appreciate following your page — it is a personal view on living as a mother with Marfan and some of the choices you have to deal with.

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  6. Marfan mom here as well! Wish all the luck to NMF! Eventhough I’m here in Portugal they have been valuably helpful to me.

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  7. Good luck! What an incredible organization you’re trying to give back to.

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  8. Wish I could do more as a father and grandfather whose life has been so deeply touched by Marfan’s syndrome

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  9. Jolly good article. I admit I knew nothing about this disorder until I met someone who had it herself.

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  10. Good Luck!

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  11. Thank you for doing this Maya!! Good luck!!

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  12. good luck

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  13. anything to help the NMF!!

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  14. Great foundation!

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  15. Good luck guys! I wish I could help more! I hope you guys get the money you need :)

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  16. good luck hope the nmf wins. :)

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  17. I will do anything I can to help out!

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  18. I hope that this helps and that the NMF wins!

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  19. Good luck!

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  20. Good Luck!! Marfan children are still children and they need the help!! Such a great organization to give back!!

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  21. Fantastic foundation

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  22. national marfan has done alot with us after my daughter got diagnosed, i have met the best people when i joined, and heard about this, my daughter has gained new respect for her disorder, knowing others besides her has it.
    we also have met some wonderful people who have been a godsend to us to help direct us in the proper direction to get help, and to be an ear to listen.
    i cant thank the national marfan foundation enough, for all their hard work and helping those who have marfans, and also try and get the word out so that more doctors are aware of the syndrome, and can diagnose it early and know what to exactly look for, as well as school them on the condition…
    also they have helped give the information packet we needed to give to the school that my daughter was in, so they knew what she could and couldnt do, and what to look for!!!

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  23. Good luck to you. I love seeing people stand behind an organization they believe in and do what they can to raise money and awearness! I hope you win!

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  24. Good luck!!! Buenas suerte!!

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  25. I have a very special friend who had twins with Marfan’s. One has gone to be with the angels and the other one is doing amazing. Good Luck and God Bless :)

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  26. Good luck

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  27. I Hope you get the comments you need! Lets support the NMF :):) Good Luck!

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  28. best of luck

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  29. Always happy to help, all the best of luck!

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  30. very nice blog!

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  31. The NMF saved my emotional life. As far as coping with my disorder. Was so awesome to meet people who could answer my questions on a personal level and also meet people my age with marfan syndrome!

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  32. good luck god bless to all hope they win fingers crossed

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  33. YAY! this is great Maya!

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  34. good luck; this is an amazing organization

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  35. Love your blog Maya! You are inspirational!

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  36. good luck!

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  37. Good luck, Maya! :)

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  38. Good luck, Maya! I know how much you care about the NMF and I hope you win!

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  39. This is something that everyone should be aware of.

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  40. Best of luck NMF! Comment left with thoughts of Baby Boy Jonah Goodman! :-)

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  41. Very generous of Moments in Frames to be offering the donation!

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  42. Good luck! lets help the NMF get some money! 😀

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