One of the most satisfying aspects of being part of this community is meeting the people who work hard to create a brighter future for all those living with Marfan syndrome and related disorders. Earlier this month, we had a chance to catch up with one of our senior investigators, Silvia Smaldone, PhD, from the Icahn School of Medicine at Mount Sinai, to learn more about her research. Watch the video and you'll see how her commitment and passion really shine. She says it best: "Do the right thing and you can really solve mysteries."
This fall, we held the Adopt-A-School Victory Challenge to encourage parents, guardians, grandparents, and any adults to bring our teacher and school nurse resources to their local schools. We randomly selected one of the participants in the challenge as the winner of an iPad mini... and the winner was Eva Marie Seijo, of Virginia Beach, VA.
Ten years ago, we lost a dear member of our community, Julie Kurnitz. Julie served on our Board of Directors, appeared in our videos, was a founder of the Marfan Artists Project (which is now our Heartworks gala), led conference workshops, spoke to doctors and nurses about Marfan syndrome, and, was featured in print and broadcast media to raise awareness of Marfan syndrome. More than that, she was an inspiration to so many in our community as she gave so much of herself, with a smile on her face, even as she faced multiple medical challenges of Marfan syndrome.
Many people with Marfan syndrome have difficulty gaining weight, especially when they are younger, no matter how much they eat and how many protein shakes they consume. Some do find that they do put on weight, particularly around their middle, when they get older. (And while Marfan syndrome is frequently associated with being very thing, it is possible to be heavy and have Marfan syndrome.)
Topics: How the Body is Affected
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:
- 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.
- 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.
- 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.
- 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.
- 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.