The Marfan Blog

5 Things You Can Do for Marfan Awareness Month

Jan 8, 2014 by The Marfan Foundation

Do you still get blank stares from people when you say that you have Marfan syndrome? How many times have you been asked, “How do you spell that?  M-A-R.......how frustrating!

Marfan is still is not a household word, but February is Marfan Awareness Month and there are many things you can do to help change that! Here are five:

  1. Ask your local library if you can set up a Marfan awareness table for a day or two and share information about Marfan syndrome with members of your community. Contact your local high school about giving a presentation to biology or genetics classes about Marfan syndrome.
  2. Send Valentine Day cards (or emails) to your friends and relatives and include information about Marfan syndrome and related disorders. Share some basic facts about related disorders, too, because these have overlapping signs and treatments with Marfan syndrome and can also cut lives short.
  3. Write a “letter to the editor” of your local paper about what Marfan syndrome is and why it matters to you, and ask them to publish the letter or do an article. Suggest they interview you about your medical journey and point them to Marfan.org for medical information.
  4. Share facts about Marfan syndrome and related disorders on Facebook, Twitter, and all the social media platforms you are on throughout the month of February. Check out our Facebook page and Twitter feed every day of the month for information, pictures, and videos you can share.
  5. Get all “doctor” on your doctor; ask him or her to check out the healthcare professionals section of our website, especially our MarfanDX diagnostic tool, which many doctors find useful for evaluating the signs of Marfan syndrome.

Topics: Volunteer, Marfan Awareness

School's in Session: What Better Time to Adopt a School!

Sep 27, 2013 by The Marfan Foundation

If you have school-aged children with Marfan syndrome or a related disorder, you know how frustrating it can be when teachers and other students don’t understand what’s going on with your child. You child may feel different and, even worse, get bullied. Teachers may want to overprotect your child or act like nothing is wrong.

Instead of getting upset, take action! This is an opportunity for education! If teachers, students, and even administrators, understand Marfan syndrome and related disorders, there is more likelihood that they will be more accepting of your child, include him or her in activities that are safe, and work with you so your child has the best academic experience.

Topics: Volunteer, Marfan Awareness

Running for Those Who Can't

Sep 3, 2013 by Matt Brown

Why did I subject myself to the torment of a half marathon along the unforgiving pavement of Lake Shore Drive? Especially since my physique now has a bit of insulation around it to protect me from the harsh Chicago winter? I'm running for Julian, and I'm running for Maya.

Topics: Volunteer, Marfan Awareness, Marfan Community