The Marfan Blog

Working with Your School Nurse

Aug 24, 2019 by The Marfan Foundation

newsschoolyear

For parents of a child with a connective tissue condition, worrying is a daily habit. The beginning of a new school year is especially stressful. Not only do you and your family have to get back into the routine, but you and your child have to “break in” a new teacher and sometimes a new school and a new school nurse. You want to ensure that your child will be safe at school and empowered to achieve academically – and that the school can handle any potential emergency medical situation.

Topics: Medical Management, Education, school

Invaluable Little Moments

May 10, 2019 by Beth Utz

At a time when technology infuses our lives in almost every way, it is hard to imagine that the personal computer was invented only 35 years ago. Around that same time, a group of concerned moms and physicians were rallying around a rare condition called Marfan syndrome. Their goal was learning as much as they could to spread awareness. After forming a nonprofit, known today as The Marfan Foundation, they started bringing people together for an annual conference. The first Marfan Annual Conference was held 35 years ago this year.

Topics: Marfan Conference, Marfan Community, Loeys Dietz, Education, Annual Conference

Advocacy in Action: My Experience Lobbying for The Marfan Foundation on Capitol Hill

Jan 11, 2019 by Sinclaire Schuetze

In June 2017, a midterm election had just occurred with the issue of pre-existing conditions and healthcare as one of the hot-button issues. Pre-existing conditions, in this context, are defined as a medical condition that a person already had before their healthcare benefits went into effect. In general, the Affordable Care Act, implemented in 2014, included that pre-existing conditions must be protected by insurance and insurance companies cannot charge a person more for having a pre-existing condition. The current debate concerns the extent to which the expenses resulting from these conditions should be covered under insurance.

Topics: Health Insurance, Hill Day, Education