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Awareness of Marfan syndrome and related disorders leads to early diagnosis, treatment, and an extended lifespan. The most powerful way we can raise awareness is through you, our volunteers. Your circles of relatives, friends, co-workers, and neighbors, your knowledge, your personal journey, and your commitment cannot be matched by anyone outside of our community.

February is Marfan Awareness Month and you can do your part from the comfort of your own home on social media. In addition to sharing information from our Facebook page, Twitter feed, and YouTube Channel, you can create your own status updates, tweets, and posts to increase Marfan awareness. Our theme this year is #KnowFightWin.

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#KNOWFIGHTWIN Facebook Profile Frame

Add a frame to your Facebook profile picture anytime during the month of February. You can do this by selecting "Update Profile Picture" on your own Facebook page, then clicking "Add Frame." If you don't see the Marfan Awareness Month frame come up right away, you should be able to find it by searching 'Marfan' in the field provided.

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#KNOWFIGHTWIN Marfan Awareness Month Campaign

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FACEBOOK

  1. If you have a Facebook profile, make sure you “like” The Marfan Foundation page at https://www.facebook.com/TheMarfanFoundation so that our posts appear in your news feed.
  2. Comment and share our posts, pictures, and videos, especially during Marfan Awareness Month.
  3. Create your own Facebook posts with links to Marfan.org to educate your personal networks about Marfan syndrome. Use our hashtag #KnowFightWin in all your posts for easy tracking. Tell your story, explain why Marfan awareness is important to you, and promote Marfan facts. Encourage your Facebook friends to share your posts to multiply your impact.
  4. Post photos and share what you’re doing for Marfan Awareness Month on our Facebook page.
  5. If you are not on Facebook, now is a good time to join! Create a profile (for free) on facebook.com. Then “friend” people you know (friends, relatives, neighbors) to create your personal network before February begins. Then, when you post about  Marfan awareness, you will be sharing information with a large, and growing, group of people.

Sample Facebook Posts:
Note: If you include a photo of yourself or a family member, you can gain more attention!

  • It’s Marfan Awareness Month. An estimated 200,000 people in the U.S. have Marfan or a related disorder. About half don’t know it. Do you know the signs? #KnowFightWin http://bit.ly/MarfanSigns
  • Are you Marfan aware? Its Marfan Awareness Month. Learn the basic fact. #KnowFightWin http://bit.ly/MarfanFacts
  • February is  Marfan Awareness Month! Learn what it is! #KnowFightWin http://bit.ly/WhatIsMarfan
  • People with #Marfan syndrome can live a normal lifespan IF they are diagnosed and treated. It’s Marfan Awareness Month, so please learn the signs! #KnowFightWin http://bit.ly/MarfanSigns
  • Do you know what Marfan syndrome looks like? The outward signs could indicate a life-threatening problem that you can’t see. Find out more, including how to get evaluated, during February, which is Marfan Awareness Month. Marfan.org has all the info! #KnowFightWin

TWITTER

  1. If you have a Twitter handle, make sure you follow us @MarfanFdn.
  2. Watch for our tweets, favorite them, and retweet them to your followers.
  3. Create your own tweets about Marfan syndrome to educate your followers. Use our hashtag #KnowFightWin in all your tweets for easy tracking. Tell your story, explain why  Marfan awareness is important to you, and promote Marfan facts. Encourage your followers to retweet your tweets to multiply your impact.
  4. If you are not on Twitter, now is a good time to join! Create your twitter account (for free) on twitter.com. Then follow people you know and those who you want to influence. There’s a good chance that people you follow will then follow you back. That’s the power of Twitter. Then, when you tweet about  Marfan awareness, you will be sharing information with a large, and growing, group of people who will, hopefully, retweet your news to their followers.

Sample Tweets:

  • February is Marfan Awareness Month. Learn about Marfan at Marfan.org. #KnowFightWin
  • Marfan Awareness is very important to me. Please visit Marfan.org to learn more. #KnowFightWin
  • I’m supporting Marfan Awareness because #Marfan is in my family. Find out what it is at Marfan.org. #KnowFightWin
  • There is beauty in #Marfan syndrome. Hear Tony Award-winner Ann Reinking talk about it. #KnowFightWin http://bit.ly/MarfanReinking1
  • It’s Marfan Awareness Month! Check out the faces of #Marfan syndrome. #KnowFightWin http://bit.ly/MarfanFaces
  • #MarfanAwareness Month is a good time to learn the signs of #Marfan. Check them out here. #KnowFightWin http://bit.ly/MarfanSigns
  • Approx. 200,000 in the U.S. have #Marfan, but half don’t know it. Know the signs. #KnowFightWin http://bit.ly/MarfanSigns

YOUTUBE

Have you seen our YouTube Channel? It features more than 200 videos of doctors answering the most common questions about Marfan syndrome. There are also videos of people in our community talking about their perspective on Marfan syndrome and some of the issues that concern them. There are sections on medical, diagnostic, and treatment information; living with Marfan syndrome or a related disorder; videos for teens; and video for kids. Share the videos that mean the most to you on your social media networks.

Here is a sample:

Can children with Marfan syndrome exercise or play sports?

What are the symptoms of aortic dissection?

How do people get Marfan syndrome?

What are the questions people ask you and what should they understand about Marfan syndrome?

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FACTS TO SHARE

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PROFILE IMAGES
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Questions? Contact publicity@marfan.org