Marfan Awareness Month: February 2017 | The Marfan Foundation

Marfan Awareness Month: February 2017

#IKnowMarfan#IKnowLoeysDietz#IKnowEhlersDanlos#IKnowFAA#IKnowSGS#IKnowBeals

Each year, February is designated as Marfan Awareness Month, a time when we ramp up our efforts to heighten awareness of Marfan syndrome and related disorders. This is critical because 200,000 people in this country have these conditions and experts say that half are not diagnosed and are at risk of sudden early death. The efforts of our volunteers around the country are so important to our success. Together, we can save lives!  You can get involved through social media, community events, advocacy alerts, and more.  There’s something for everyone. We hope you will get in on the action today!

Show the World that you Know Marfan

For the first time, we are offering a special awareness month t-shirt featuring our theme, #IKnowMarfan. Wear one of our exclusive purple or red t-shirts (your choice) all year long! We are taking pre-orders until February 28 only. Please order yours today

Social Media

Here’s another first: our customized profile overlay for Facebook! Change your profile picture to tell the world that #IKnowMarfan. Throughout February, we are sharing infographics, facts, and photos on our Facebook, Twitter, Instagram, and Snapchat! Please share our posts and post your own! We would love to see you share your story and a photo! Remember to tag The Marfan Foundation and use the hashtag #IKnowMarfan. If you have a related disorder, use that hashtag when you post (#IKnowLoeysDietz, #IKnowEhlersDanlos, #IKnowFAA, #IKnowSGS).

Community Events

We encourage our community groups and individuals across the country to do organize events locally and we will support your efforts! You may want to organize awareness events in schools, community centers, work places, and conferences or arrange for dining out events that will promote awareness and foster connections -- all while helping to raise funds. If you are organizing a local fundraiser, you can easily set it up on our website. Regardless of your plans, please tell us about them and we can work with you to achieve success!

Legislative Advocacy

As a Marfan syndrome and related disorders advocate, you can play a vital role in communicating with members of Congress on the important issue of responsible healthcare reform. Please read this action alert and call or email your representatives today. Please let us know if you are taking action. If you have any questions about legislative advocacy, please contact Jo Grima, Chief Science Officer, jgrima@marfan.org.

Marfan Awareness Day of Giving

New this year: February 15 is Marfan Awareness Day of Giving! If you can say #IKnowMarfan and you want the general public and medical community to be able to say the same thing, help support our education and awareness programs by making a donation on February 15. Our goal this year is $15,000. We appreciate all your contributions, large and small. Donate on February 15 or any time in February to be part of our very first Marfan Awareness Day of Giving! If you have any questions about the Marfan Awareness Day of Giving, please contact Helaine Baruch, Chief Development Officer, hbaruch@marfan.org.