Actor Jason Alexander is a very busy man. Even though the Seinfeld has ended, Alexander has his hands full appearing in several movies and TV shows, running a production company and creating a new series for Fox. Even with all this on his plate, Alexander remains a national spokesperson for the Scleroderma Foundation, a non-profit whose mission is to help those suffering from this debilitating and sometimes lethal disease.
Even though scleroderma may sound unfamiliar, an estimated 300,000 people in the United States suffer from this disease. A chronic, autoimmune disease of the connective tissue, scleroderma has many possible symptoms. These include thickening of the skin, swelling of the hands and feet, tightness in the joints and digestive problems. Even though early detecton is improving, it can still prove difficult because many symptoms are similar to those of other diseases. The exact cause of scleroderma is unknown, and it affects 4 times more women than men.
How Jason Alexander came to know about this disease is through his half sister, Karen Van Horne. Diagnosed in 1995, Van Horne is suffering from systemic sclerosis, one of the more debilitating and dangerous classifications of scleroderma. She finds it difficult and painful to digest food.
Hesitant to ask her brother to be a spokesperson, knowing that she would lose some of her privacy, Van Horne says, "Jason is the actor in the family. I went through school without raising my hand once." However, she decided to go for it and Alexander has been a dedicated fundraiser and representative for the organization ever since. Speaking together at several press conferences, television shows including The View and at annual conferences, they strive to get the word out about this almost unheard of disease.
Alexander, who donates half of his salary from his television appearances on Hollywood Squares to the foundation, also plays a hand in fundraising. Timothy Hanke, the National Director of Publications for the Scleroderma Foundation says that's even though the disease multiple sclerosis has the same amount of population, scleroderma does not get equal funding. Alexander has lobbied a special Senate Committee addressing this very issue.
Hanke says that many people living in rural areas are at risk for misdiagnosis and that even dermatologists, who usually first see scleroderma patients, have no knowledge of the disease. Along with Alexander, the Foundation continues to get the word out through their website and 800 number (1-800-722-HOPE). By offering information on symptoms, treatments and specialists, together they hope to help those in need of answers to years of suffering. 