The Marfan Foundation: Know the Signs. Fight for Victory.
By Maya Brown-Zimmerman, Board Member, The Marfan Foundation on July 27, 2016
Marfan syndrome is one of the most common rare disorders you’ve never heard of. Affecting 1 in every 5,000 people worldwide, this potentially life-threatening connective tissue disorder affects the heart and blood vessels, eyes, bones and joints, lungs, and nervous system. It can cause aortic aneurysms (bulge in the large artery that takes blood away from the heart), lung disease, and blindness. The disorder can also cause a tall, thin stature with joint hypermobility, which often leads to chronic pain. Marfan features range from mild to severe, with many of the most extreme cases diagnosed at birth, and others not until late in adulthood.
When Brody (pictured in the photo above) was diagnosed with Marfan syndrome shortly after birth, local doctors painted a bleak picture for his parents. After connecting with other parents through The Marfan Foundation, Brody’s parents learned that there was still a lot of reason to hope. In the past, the most severe presentation of Marfan was fatal by age two; however, thanks to new research, there are now medications and effective surgeries that give even the smallest among us an improved life expectancy. Brody, who had open heart surgery at 15 months old, is now almost 6 and preparing for kindergarten. He likes superheroes and the Kansas City Jayhawks, and his parents are looking ahead to his future.
The Marfan Foundation's Quality of Life Initiative:
The Marfan Foundation creates a brighter future for everyone affected by Marfan syndrome and related disorders by:
- Pursuing the most innovative research and make sure that it receives proper funding
- Creating an informed public and educated patient community to increase early diagnosis and ensure life-saving treatment
- Providing relentless support to families, caregivers, and healthcare providers
We will not rest until we’ve achieved victory—a world in which everyone with Marfan syndrome or a related disorder receives a proper diagnosis, gets the necessary treatment, and lives a long and full life.
The Quality of Life Initiative focuses on the aspects of Marfan syndrome that go beyond treating the specific features of Marfan syndrome. Through this movement, the Foundation is broadening its base of professionals in a variety of areas, including psychology, therapeutic fields, and alternative methods for treating pain. They are addressing non-medical issues that people with Marfan must deal with every day through workshops at the Foundation’s annual conference, regional symposium, and phone support groups. It’s not just about years in a life, but being able to enjoy that time with a healthier body. Kids like Brody should be able to look forward to a future where pain and other complications don’t hold them back from a full life.
To learn more about Marfan syndrome and related disorders, as well as the life-saving and life-enhancing programs and services of The Marfan Foundation, please visit Marfan.org.
Support This Cause Through Workplace Giving:
The Marfan Foundation is a member of America's Charities. Your company can support The Marfan Foundation by starting an employee giving program with America's Charities. Our online giving technology and solutions can facilitate your workplace giving campaign and other company cause initiatives. America’s Charities has been mobilizing the workforce to affect social change through employee giving and other company philanthropic initiatives for over 35 years and we have raised more than $650 million of sustainable funds for more than 10,000 nonprofits as a result.