About

Have something to share or ask? Feel free to send us a message and we'll do our best to respond when we have a break.

Hi! I'm a patient with Marfan and father to a child with Marfan. I had a confusing journey to diagnosis and treatment, and want to empower others in similar situations to live a great life.

Along the way, I had chances to meet many people directly and indirectly affected by Marfan. Some information and stories were such gems that I wanted to share and preserve them for the benefit of others.

I hope you found the site useful and helpful. God bless you!