This book is Dan’s story: how Duchenne fits into his life and feelings. The authors, Joseph and Liora Yasmeh, are siblings, young students, and aspiring doctors. Joseph just graduated from UCLA, and Liora, attends Valley Torah High School.
This book was inspired by Joseph’s participation in the online course PS121 “Disease Mechanisms and Therapies”, which is focused entirely on DMD. The course brings undergraduates into the real world challenges of caring for a child with DMD, including issues of physical therapy, nutrition, and wheelchair accessibility. Students also learn of experimental therapies that are in the pipeline for DMD and they acquire the scientific skills to understand research in the DMD field. The course is available to undergraduates across the University of California system, whose long-term goals are to pursue careers in medicine, physical therapy education, and research. We anticipate that PS121 will contribute to a new generation of scientists, care takers, physicians, and teachers with greater awareness of DMD. We are grateful for the support from PPMD that was instrumental in the development of the course.
In addition to their weekly assignments, PS121 students work in teams to create a Community Media Project. For example, many teams interacted with parent advocates who have started their own non-profit organizations and research centers to support medical advancements, and who are active leaders in the community to lobby the FDA for fair drug approval processes. From these experiences, students realize and begin to model community leadership qualities. In another example, teams created a Teaching Tidbit that is aimed at the lay public and includes lessons on disability, care giving, molecular mechanisms of disease, and communicating the role of science and the NIH in society. Some teams have also created videos for families who do not speak English as a first language. Lastly, Joseph and Liora, wrote, illustrated and then published an educational book for children with disability.
Because online education is a new and emerging educational technology, we have conducted many assessments of the students in our course. PS121 students report that their experience in the course is meaningful and transformative. They appreciate the opportunity to learn deeply by focusing on the single complex problem of DMD to develop critical thinking skills, while being stimulated to think beyond themselves. In PS121, undergraduates learn to integrate concepts from many disciplines to address real world challenges and to engage with the community. They also appreciate the opportunity to learn from many different experts in the field of DMD.