The Karen Brown Scleroderma Foundation was created by Karen just months before this disease ended her life. It was her desire, and it has become our mission, to provide a new source of research money, that will help accelerate the pace of scleroderma research.
We are not a large nonprofit organization that produces slick marketing material and big galas. We are a grass-roots organization that is supported by a wide variety of people, many of whom never knew Karen—nor anybody else with the disease for that matter. People support us because what we are accomplishing makes sense to them. With no payroll, rent or many of the other normal expenses, they can see the direct connection between their support and our ability to provide research grants.
What is scleroderma?
Scleroderma is a connective tissue disease that involves changes in the skin, blood vessels, muscles, and internal organs.
The most obvious effect of scleroderma is the thickening and hardening of the skin, which is a result of the overproduction of collagen. This implies that scleroderma is only a skin disease and thereby tends to trivialize its consequences in many people’s mind. But the same thing that happens to the skin can happen inside the body, and thus can shut down internal organs.
The fact that some patients are affected only on the skin, while others have no skin involvement but have their internal organs attacked makes scleroderma very unpredictable and complex; each case is highly individualized.
Of the 300,000 Americans that have scleroderma, many have a moderate or a slower progressing form that can be managed for a very long time. For others, time is short because their internal involvement can lead to the failure of the gastrointestinal system, kidneys, heart, or lungs.
Scleroderma has been especially difficult for researchers: After decades of research, the cause is still unknown. Some cases have been linked to environmental components, chemical exposures, genetics, fetal cells, bacteria and viruses. Nevertheless, most cases cannot be linked to anything.
But this is not to say that there has been no progress. Since Karen’s death in 2000, there have been a substantial number of successes in treatments; most are focused on ways of minimizing the damage the disease inflicts. And even though we still don’t know the cause, scientists are assembling more and more pieces of this puzzle all the time. It’s just a matter of more money supporting the best science.