January 8, 2020

Announcing the #MarfanVictoryChallenge!

February is Marfan Awareness Month, a time for all of us in the community to escalate our efforts to increase Marfan awareness. This year, we hope you will join us in the #MarfanVictoryChallenge

The idea is to spread the word about Marfan syndrome – through social media; through community events, such as educational events or fundraisers at work, school, or other community settings; or through legislative activities, such as getting a local proclamation for Marfan Awareness Month.

Then, it’s time to share your Victory! There are two ways to do this:

1. Take action to raise awareness during Marfan Awareness Month.  Plan an awareness project and then tell us how it went. Include a photo of yourself with your fingers in a V for Victory. Then, tell all your online friends what you did for Marfan Awareness Month. Be sure to use our hashtag, #MarfanVictoryChallenge.

For example:

  • I tweeted to my congressional reps about Marfan syndrome! #MarfanVictoryChallenge
  • I did a bake sale at school, and handed out brochures about Marfan syndrome! #MarfanVictoryChallenge
  • I am sharing Marfan facts throughout the month of February! #MarfanVictoryChallenge
  • I got my local pizza shop to give a percentage of sales to The Marfan Foundation! #MarfanVictoryChallenge
  • I created a Facebook fundraiser for The Marfan Foundation! #MarfanVictoryChallenge

Contact us at volunteer@marfan.org if you’d like assistance or need ideas.

2. Share your personal Victory with us. Send us a photo of yourself with your fingers showing a V for Victory and include a note telling us your personal victory.

You can tell us things like:

  • I just celebrated five years since aortic surgery! #MarfanVictoryChallenge
  • I just had my annual echocardiogram and there is no change! #MarfanVictoryChallenge
  • I got through the day relatively pain-free! #MarfanVictoryChallenge
  • I am getting mental health support! #MarfanVictoryChallenge
  • I have a strong support system of family and friends! #MarfanVictoryChallenge

Email us at publicity@marfan.org and we will feature your picture on our social media during February. You can also help raise awareness by posting your photo and victory on your own social media. Remember to use our hashtag #MarfanVictoryChallenge.

Awareness saves lives. Let’s take advantage of Marfan Awareness Month and make sure the world knows about Marfan!