Sickle cell disease (SCD) is a genetic condition that affects approximately 100,000 people in the United States and millions more globally. Individuals with SCD endure the psychological and physiological toll of repetitive pain as well as side effects from the pain treatments they undergo. Some adults with SCD report reluctance to use health care services, unless as a last resort, due to the racism and discrimination they face in the health care system. Additionally, many aspects of SCD are inadequately studied, understood, and addressed. Addressing Sickle Cell Disease examines the epidemiology, health outcomes, genetic implications, and societal factors associated with SCD and sickle cell trait (SCT). This report explores the current guidelines and best practices for the care of patients with SCD and recommends priorities for programs, policies, and research. It also discusses limitations and opportunities for developing national SCD patient registries and surveillance systems, barriers in the healthcare sector associated with SCD and SCT, and the role of patient advocacy and community engagement groups. Table of Contents Front Matter Summary 1 Introduction 2 Societal and Structural Contributors to Disease Impact 3 Screening, Registries, and Surveillance 4 Complications of Sickle Cell Disease and Current Management Approaches 5 Health Care Organization and Use 6 Delivering High-Quality Sickle Cell Disease Care with a Prepared Workforce 7 Developing and Delivering the Next Generation of Therapies 8 Community Engagement and Patient Advocacy 9 Strategic Plan and Blueprint for Sickle Cell Disease Action Appendix A: Public Meeting Agendas and Submissions to the Committee Appendix B: Literature Search Terms and Strategy Appendix C: Committee and Staff Biographies Appendix D: Newborn Screening Results Reporting Protocols for Sickle Cell Disease and Sickle Cell Trait Appendix E: Sickle Cell Data Collection Program Appendix F: Georgia Comprehensive Sickle Cell Center: A Case Study Appendix G: Emory Adult Cystic Fibrosis Program Appendix H: Health Resources and Services Administration Sickle Cell Disease Programs Appendix I: Select Treatments Currently Under Development for Sickle Cell Disease Appendix J: Other Training Models for Hematologists Appendix K: Sickle Cell Community-Based Organizations and Patient Groups in the United States Appendix L: Summary Table of Strategic Plan and Blueprint for Sickle Cell Disease Action Appendix M: Summary Table of Sickle Cell Trait Discussion in Report Appendix N: Glossary

When over 900 followers of the People's Temple religious movement committed suicide in 1978, they left a legacy of suspicion and fear. Most accounts of this mass suicide describe the members as brainwashed dupes and overlook the Christian and socialist ideals that originally inspired People's Temple members. ""Hearing the Voices of Jonestown"" restores the individual voices that have been erased, so that we can better understand what was created - and destroyed - at Jonestown, and why. Piecing together information from interviews with former group members, archival research, and diaries and letters of those who died there, Mary McCormick Maaga describes the women leaders as educated political activists who were passionately committed to achieving social justice through communal life. She provides evidence that shows many of these women voiced their discontent with the actions of the People's Temple in the months right before the mass suicide. The book puts human faces on the events at Jonestown, confronting theoretical religious questions as Maaga attempts to reconcile how worthy utopian ideals come to meet such tragic and misguided ends.

When over 900 followers of the Peoples Temple religious group committed suicide in 1978, they left a legacy of suspicion and fear. Most accounts of this mass suicide describe the members as brainwashed dupes and overlook the Christian and socialist ideals that originally inspired Peoples Temple members. Hearing the Voices of Jonestown restores the individual voices that have been erased so that we can better understand what was created - and destroyed - at Jonestown, and why. Piecing together information from interviews with former group members, archival research, and diaries and letters of those who died there, Maaga describes the women leaders as educated political activists who were passionately committed to achieving social justice through communal life. The book analyzes the historical and sociological factors that, Maaga finds, contributed to the mass suicide, such as growing criticism from the larger community and the influx of an upper-class, educated leadership that eventually became more concerned with the symbolic effects of the organization than with the daily lives of its members. Hearing the Voices of Jonestown puts human faces on the events at Jonestown, confronting theoretical religious questions, such as how worthy utopian ideals come to meet such tragic and misguided ends.

With the Novel Engineering approach, “students become excited about what they are reading, writing, designing, and building! This excitement in turn helps them make strides in engineering and literacy, as well as in their abilities to work together, think creatively and analytically, and communicate their ideas.� —from Chapter 1 of Novel Engineering This book will both introduce your students to an exciting integrated curriculum and support you as you use it in your own elementary or middle school classroom. Novel Engineering shows how your students can work through engineering design challenges inspired by a broad range of literature—novels and short stories, biographies and histories, or even picture books. By way of introduction, the book offers clear conceptual background and practical advice on how the approach works: Your students pull information from literature to identify a problem. Then, using details from the story or text, they go through an engineering design process to develop functional solutions for their “clients�—the book’s characters. To support your efforts and bring the concept to life, the book gives you five in-depth case studies featuring the use of novels, a biography, and a nonfiction historical text. In addition to demonstrating what a Novel Engineering project looks like in an actual classroom, the case studies give you practice in thinking about what your students’ work might look like and how you would respond. One case describes a class in which students help the shipwrecked Swiss Family Robinson build a shelter to keep them cool under the hot sun. Another tells of students who design a hearing aid for the main character in El Deafo—and then style it as a fashion accessory. You’ll see that the books used in the case studies are just suggestions. You don’t have to adopt texts outside your existing English language arts or social studies curriculum. You also don’t have to buy a specific building-materials kit. You just have to embrace the idea that literacy and engineering can support each other in your classroom—and then watch the excitement build.