The Official Parent's Sourcebook on Spinal Muscular Atrophy: A Revised and Updated Directory for the Internet Age

Description

This sourcebook has been created for parents who have decided to make education and Internet-based research an integral part of the treatment process. Although it gives information useful to doctors, caregivers and other health professionals, it also tells parents where and how to look for information covering virtually all topics related to spinal muscular atrophy, from the essentials to the most advanced areas of research. The title of this book includes the word official. This reflects the fact that the sourcebook draws from public, academic, government, and peer-reviewed research. Selected readings from various agencies are reproduced to give you some of the latest official information available to date on spinal muscular atrophy. Following an introductory chapter, the sourcebook is organized into three parts. PART I: THE ESSENTIALS; Chapter 1. The Essentials on Spinal Muscular Atrophy: Guidelines; Chapter 2. Seeking Guidance; Chapter 3. Clinical Trials and Spinal Muscular Atrophy; PART II: ADDITIONAL RESOURCES AND ADVANCED MATERIAL; Chapter 4. Studies on Spinal Muscular Atrophy; Chapter 5. Patents on Spinal Muscular Atrophy; Chapter 6. Books on Spinal Muscular Atrophy; Chapter 7. Multimedia on Spinal Muscular Atrophy; Chapter 8. Periodicals and News on Spinal Muscular Atrophy; Chapter 9. Physician Guidelines and Databases; Chapter 10. Dissertations on Spinal Muscular Atrophy; PART III. APPENDICES; Appendix A. Researching Your Child's Medications; Appendix B. Researching Alternative Medicine; Appendix C. Researching Nutrition; Appendix D. Finding Medical Libraries; Appendix E. Your Child's Rights and Insurance; ONLINE GLOSSARIES; SPINAL MUSCULAR ATROPHY GLOSSARY; INDEX. Related topics include: Infantile Spinal Muscular Atrophy, Type I, Juvenile Spinal Muscular Atrophy Type III, SMA, Infantile Acute Form, Spinal Muscular Atrophy Type I, Spinal Muscular Atrophy Type III, Werdnig-Hoffman Paralysis, Werdnig-Hoffmann disease.