The Jack Orchard ALS Foundation

Although ALS was identified as a unique disorder in 1869, there is still no effective treatment, and medical science still cannot identify the cause of the disease in more than 90% of the cases. While ALS is menacingly complex, the failure to understand and adequately treat it arises largely from the ineffective structure of the U.S. health care industry, which neglects rare diseases where the promise of economic return is small. Although the incidence of ALS is nearly the same as that of Multiple Sclerosis, most ALS sufferers die within five years of diagnosis leaving only 30,000 Americans living at any one time with the disease. Naturally, ALS would be less rare if those suffering from it lived longer. Therefore, the Jack Orchard ALS Foundation's Research Grants are focused on efforts to discover therapies in the ?near-term?, those that may slow the progression of the disease in patients alive today, in an attempt to expand the ALS community, and thereby alter the incentives underlying drug makers? decisions about allocating R&D spending toward ALS. However, the fight against ALS needs more than money. It needs a national coalition of people dedicated to finding a cure. Building this coalition will be challenging. Its core must be the families living with the disease. But in general they are overwhelmed, both physically and emotionally, trying to cope with the dual demands of progressive paralysis and terminal illness. And then there is the problem of numbers: even if every ALS family and their close friends joined together, they would number less than 400,000 people. The solution is far easier said than done. We need to help ALS families cope with the burdens under which they labor so they can be active, outspoken advocates for change, and we must engage others untouched by ALS to join their cause. The Jack Orchard ALS Foundation pursues these objectives by supporting Extra Hands for ALS, an innovative service through which students visit ALS families each week to help them with household chores and errands. As the students build relationships with those affected by ALS, they become highly impassioned about fighting the disease. Their passion is most evident in the public awareness events in which they are required to participate. While all volunteers must participate in two such events annually, most design and implement several each semester. They are deeply engaged, highly committed. Extra Hands for ALS brings together ALS families, students, adult mentors who supervise them, schools, parents, and corporate sponsors, all joined together in a unified team intent on eradicating ALS.