mdasurveyoncostsofamyotrophiclateralsclerosis,.docVIP

MDA Survey on Costs of Amyotrophic Lateral Sclerosis, Muscular Dystrophy, and Spinal Muscular Atrophy Conducted by the Muscular Dystrophy Association 3300 East Sunrise Drive Tucson, AZ 85718 Survey Instructions Thank you for filling out this survey for the Muscular Dystrophy Association. The purpose of the survey is to estimate the costs of the three conditions, Amyotrophic Lateral Sclerosis (ALS), Muscular Dystrophy (MD), and Spinal Muscular Atrophy (SMA). We are trying to include the “extra” costs that may not show up easily such as the financial sacrifices made by family members. Your answers will show us how to help families dealing with these conditions. This information will also help us to ask for more services and research about these diseases. In this survey, the person who has the disease will be referred to as “the affected person”, though we understand that the entire family is actually “affected” by the disease. Who should fill out this survey? In general, the person in your family who is most familiar with the family finances should fill out this survey. For specific questions about the affected person, you may want his or her own input. Affected persons can also answer the questions themselves if they are 18 years of age or older. In the survey, you will be asked questions about: the affected person’s health, the members of your family, your health insurance, and the way the disease has made a difference in the lives of family members, such as how it has affected their jobs, etc. We also want to know what services the affected person needs and the costs of those services. We included many different kinds of questions in this survey. Please do your best to answer all the questions. To answer the questions, it might be helpful to look at last year’s tax return, records about medical expenses, or employment records. This is not required though. If you are not sure about a question, please give your best guess. The survey should take about