April 20, 2012
by marfmom
5 Comments
It’s been one of THOSE weeks as far as special needs stuff goes. I KNOW some of you know what I mean. So, what better way to end the week than by participating with Adventures in Extreme Parenting’s Special Needs Ryan Gosling Linkup?
Check out all the other “Hey Girl” memes! Guaranteed to put a smile on your face! (Unless you hate Ryan Gosling, in which case I’m not sure we can stay friends.)
April 20, 2012
by marfmom
2 Comments
It’s Friday, so you know what that means!
Come on over and link up the favorite post that you wrote this week. I promise I’ll come over and comment on each of your posts. I hope that you’ll spread the love and visit the blog or two above yours too. I’ll leave the linky up through Sunday night.
April 19, 2012
by marfmom
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