Marfan syndrome affects an estimated 1 in 5,000 people regardless of race, ethnicity, or gender, and experts estimate that nearly half the people who have Marfan syndrome do not know it. Without proper diagnosis and treatment, they are at high risk for an aortic dissection and sudden death.
Awareness of Marfan syndrome and related conditions 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. Join America’s Charities and our member, The Marfan Foundation, by participating in the #MarfanAwareness during February.
- Give through your workplace: You can make a significant difference by donating through workplace giving. Check with your employer to see if they will double your donation with a matching gift. Don’t have a program? Click here to have your employer contact our team about bring employee giving to your workplace.
- Raise aweareness: Help The Marfan Foundation raise awareness about Marfan syndrome by using the library of ready-to-use social media graphics here.
- Educate Yourself: This month, The Marfan Foundation has two webinars on the basics of Marfan syndrome. On February 9, we will focus on medical management with two members of our Professional Advisory Board, Dr. Shaine Morris, pediatric cardiologist, Texas Children’s Hospital, and Dr. Chris Malaisrie, aortic surgeon, Northwestern Medicine (register here). Then, on February 16, we will have a Personal Perspectives Panel with members of the Marfan community talking about how they coped when first diagnosed. (register here).
There are many ways for you to take part in Marfan Awareness Month and every little bit helps. Click here for a list of more ways to support The Marfan Foundation.