Know the Signs, Fight for Victory

The Marfan Friendly Connection Program gives individuals of any age an opportunity to connect with another person who is on a similar journey with Marfan syndrome.

Whether you are affected directly, or are a family member of an affected person, you can connect and participate regardless of your location. For a community that frequently experiences isolation, this is a great opportunity to connect with others one-on-one.

Watch for the debut of this program in 2022.

Gone But Never Forgotten: A New Way to Think About Grief

I like to think that I’m a fairly positive person, especially when it comes to my Marfan diagnosis. It has taken a long time to get here. Not every day is a good day, but, overall, I see my Marfan diagnosis as something that benefits my life. Then there are my bad days. They are filled with joint pain, migraines, and sometimes the inability to get up out of bed. We all have our bad days physically, but we keep going because that’s our life. Recently, however, I’ve been forced to…