An Orphan

 

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Why Is ALS Termed an Orphan Disease?

ALS is an orphan disease because "only" approximately 30,000 Americans are living with ALS at any one time.  It must be remembered, though, that there are many people who have lived with and died as a result of ALS.  More than 5,000 new cases are diagnosed each year, and thus approximately that same number of people die as a result of ALS each year. And, because ALS is fatal, and the time between diagnosis and death is, on average, a matter of a few years, there are few persons with the disease who have the time or energy to commit to educating others about the disease.  Back to What is ALS?

Curtis and Heidi publicized the fact that he had ALS a few months after his diagnosis, at the same time that they admitted to themselves that he had a fatal disease. Heidi wrote articles in their local paper, which an AP writer picked up on, and in turn, wrote an article that spread across the nation. Beth, Curtis, and Heidi at Curtis and Heidi's wedding, Nov. 27, 1999Beth Chamberlin, star of The Guiding Light, a CBS soap opera, spoke to them about starting a nonprofit organization. By the time they started working on the foundation, Curtis was nearing the end of his life. Also, during the time that Curtis was alive, all of their energy went into keeping him alive. Living with ALS in its later stages requires constant concentration, time, and energy. Fortunately, after Curtís passing, Heidi, Beth, and family and friends continue to support the cause, both financially and by raising awareness.