The Marfan Blog

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

The Easiest Resolution: Taking Control of Your Health Journey in 2019

Jan 8, 2019 by The Marfan Foundation

The ball has dropped, and we rang in the New Year. Ready or not, 2019 is here.

Topics: Healthcare Management, Medical Management, Backpack Health

Empowerment Means Saying Goodbye to the Sidelines

Nov 27, 2018 by The Marfan Foundation

Keith has never been terribly outgoing. He’s taller than other kids and wears thick glasses. He does not like the glasses. They’ve always bothered him, but now, as he gets a little older and he gets more questions about them from kids his age, he really wishes he could just wear contacts.

Topics: Marfan Awareness, Marfan Community, Quality of Life

Peace Through Connection

Nov 19, 2018 by The Marfan Foundation

Connection is at the core of the Snyder family’s resilience. Through a combination of close family connections and connections to the right medical care at the right time, this family of four is successfully navigating Loeys-Dietz syndrome times 3.

Topics: Marfan Conference, Marfan Community, Research, Quality of Life, Loeys Dietz

Lifesaving Education

Nov 13, 2018 by The Marfan Foundation

 

There are few things stronger than a mother’s intuition. The strength of this “knowing” is so deep, in fact, that it could be life-saving. That was certainly the case with Jayla and her mom, Becky. 

Topics: Marfan Awareness, Marfan Community, Quality of Life