Topics: Volunteer, Diagnosis, Quality of Life, doctors, Healthcare Management, Annual Conference
Amy Kipnis with her family at Hill Day in 2019.
Topics: Volunteer, Marfan Awareness, Hill Day, Education
Topics: Volunteer, Marfan Community, Living Successfully, Quality of Life
Blake and I met in high school. When I went to his high school graduation, I met his mom and dad. I made a comment about how tall he was while his parents were so short. That’s when I learned that his dad was there with his step-mom; Blake’s own mother died when he was eight years old from complications of Marfan syndrome.
Topics: Volunteer, Living Successfully, Quality of Life