The Marfan Blog

Expressing Gratitude

Jun 16, 2015 by Alix McLean Jennings

On May 17, 2015, Alix McLean Jennings, of Madison, NJ, led Team Cassie in the Superhero Half-Marathon and Relay in Morristown, NJ, in honor of her daughter, Cassie, 8, who has Marfan syndrome. With her permission, we are sharing the letter of gratitude that she sent her many family members and friends who supported her in her effort to raise money for The Marfan Foundation.

Topics: Volunteer, Marfan Awareness, Marfan Community

Adopt-A-School Victory Challenge Mini iPad Winner

Nov 11, 2014 by The Marfan Foundation

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.

Topics: Volunteer, Marfan Awareness, Marfan Community

Jennifer Lynch - My Marfan Story

Sep 26, 2014 by Jennifer Lynch

My daughter, Emma, just started 6th grade - middle school in our district. Like a lot of parents in my town, I watched her get on the bus, looking more grown up than ever, and then stood there for a moment, wondering, “How did THAT happen? Didn’t I just get her to give up her pacifier?”

Topics: Family Planning, Volunteer, Marfan Community

Nicole Kramer - My Marfan Story

May 2, 2014 by Nicole Kramer

Twelve years ago I married my husband Mike. Up until I met him, I had never heard of Marfan syndrome. My husband was diagnosed with Marfan syndrome at the age of 9. I came to understand that he had an issue with his heart that he took medication daily for and had echocardiograms to monitor his condition every six months. He was very tall and he had a pectus deformity which had been operated on when he was a child. Being a private person, I quietly read about the disorder and filed it away in the back of my mind, not wanting to talk about it or face the reality of this condition. Within a year of meeting Mike, he had two pectus surgeries. These were very painful but he fought hard and made a full recovery.

Topics: Family Planning, Volunteer, Marfan Community, Living Successfully

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