The Marfan Blog

Top 10 Benefits of Remote Jobs for those with a Chronic Condition

Jun 2, 2020 by Dominga Noe

When I came to work for the Foundation in 2016, I was the first full-time employee with Marfan Syndrome. Originally, I worked mostly in the office, then part-time at home, and now I am fully remote as I moved to Kansas City, MO back in April. My transition coincided with the work-from-home movement that was made necessary by COVID-19. Like the Foundation, in a time of social distancing, more and more businesses are learning the value of remote jobs for their employees. While many people thrive working in the office, I have experienced first-hand how working from home has so many benefits, especially if you have a chronic condition. I believe that for those of us with chronic conditions, remote work is so much more than just a job perk. It’s a professional lifeline. How so?  Here are my ten benefits to working remote with a chronic condition:

Topics: Quality of Life, Tips, self care, Work from Home, wellness

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

We Found Our Family

Nov 9, 2018 by The Marfan Foundation

 

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