The ball has dropped, and we rang in the New Year. Ready or not, 2019 is here.
Recent Posts
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
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
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
For most people, family is the first group of people we know and trust. Newborn babies know their mothers by sound. Kids instinctively look to the people they trust for social cues. In a lot of cases, this tight circle is the family into which a child is born. In other cases, family is created over time with friends and neighbors who love and support one another like any family.
Topics: Marfan Awareness, Marfan Community, Quality of Life
