The Marfan Blog

My Marfan Story: Kacey Lamphier

Feb 27, 2018 by Kacey Lamphier

The month of February is extra important to me as it marks the month of the heart. I have been living with Marfan syndrome for 30 years; however, I’ve only been diagnosed for 22 years. I try every day to share my story and knowledge about the condition. The more we speak up, the more people we can be helping. Here is my story.

Topics: Marfan Awareness, Marfan Community, Living Successfully

Marfan Diagnosis: A Game Changer

Feb 20, 2018 by Rita McCrerey

A Marfan or related disorder diagnosis can be elusive for an athlete, particularly an athlete who does not display the typical cluster of characteristics.

Topics: Marfan Awareness, Marfan Community, Physical Activity

Jamie Efurd - My Marfan Story

Feb 8, 2016 by Jamie Efurd

“Make it through the door, Jamie. Make it through the door.” Those were my first thoughts as we were leaving the pediatric ophthalmologist appointment for my daughter, Callie (age 4), after her doctor mentioned that we should look into something we had never heard of before, Marfan syndrome. The door I was referring to was the front door to the building, the building I initially thought we were going into just to get our daughter some glasses. I needed fresh air immediately and for my daughter not to see me break down into tears.

Topics: Family Planning, Marfan Awareness, Marfan Community

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

Peter Donato - My Conference Story

Apr 8, 2015 by Peter Donato

The end of this year will mark 10 years since my world changed, 10 years since my parents scoured the internet trying to find anything about this new syndrome, 10 years since I was diagnosed with Loeys-Dietz syndrome. My parents found some of the information they were looking for on The Marfan Foundation’s website. Then, the following summer, they took my brother and me to a conference the Foundation was having in Philadelphia.

Topics: Marfan Conference, Marfan Awareness, Marfan Community