Visions

The Inspirational Journeys of Epilepsy Advocates
Erscheinungsjahr 2020
ISBN: 978-0-19-069207-0
Verlag: OXFORD UNIV PR

Buch, Englisch, 372 Seiten, Format (B × H): 161 mm x 240 mm, Gewicht: 994 g

Visions: The Inspirational Journeys of Epilepsy Advocates contains the stories of 50 people who have answered the call to advocate on behalf of those with epilepsy. They are people with epilepsy or members of their community, motivated to make a positive impact through education and awareness, empowerment, fundraising, healthcare and research, and organizational advocacy. Shining a light on well-known issues as well as rare forms of epilepsy and SUDEP (Sudden Unexpected Death in Epilepsy), these advocates depict their journeys through both prose and photographs. Along with stories that depict the advocates' journeys, photographs show these advocates and their work in action. Visions: The Inspirational Journeys of Epilepsy Advocates empowers people affected by epilepsy and inspires continued advocacy for what has been a misunderstood and underfunded neurological disorder.

Autoren/Hrsg.

Sudlesky, Linda

Schachter, Steven C.

Fachgebiete

• Medizin | Veterinärmedizin Medizin | Public Health | Pharmazie | Zahnmedizin Klinische und Innere Medizin Neurologie, Klinische Neurowissenschaft

Inhaltsverzeichnis

- Dedication

- Acknowledgments

- Preface

- Introduction

- Section 1: Education and Awareness

- 1. Anita's Vision

- Debra Josephs

- 2. Talking About Epilepsy

- Ken Lowenberg

- 3. In Honor of Carolina

- Eric Miller

- 4. Parent, Researcher, Advocate

- Joan K. Austin

- 5. Purple Day

- Cassidy Megan

- 6. My Epilepsy Story

- Brandy Parker-McFadden

- Section 2: Empowerment

- 7. Hidden Truths

- Julie Thompson-Dobkin

- 8. The Intermission - My Story

- Joyce Bender

- 9. You Can

- Meg Busing

- 10. Ministry of Advocacy

- Tony Coelho

- Section 3: Fundraising

- 11. Livy's Hope

- The Scheinman Family

- 12. Pyramids for Kevin

- Patricia Barnes

- 13. With Every Step There is Help

- Amanda Marrazzo

- 14. Sharon's Ride.Run.Walk

- William E. Rosenfeld and Susan M. Lippmann

- Section 4: Healthcare and Research

- 15. Our Journey for Adelaide

- Kelly Cervantes

- 16. Person with Epilepsy, Doctor, and Advocate

- Brien Smith

- 17. Giving Hope

- Jim Abrahams

- 18. Navigating a New Path

- Susan Arthurs

- 19. My Road to Advocacy - A Personal Tale of Triumph with Epilepsy

- Kenneth R. Kaufman

- 20. My Advocacy Journey

- Catherine Jacobson

- 21. One Family at a Time

- Sookyong Koh

- 22. Guiding Others' Journey Through Neurosurgery

- Monika Jones

- Section 5: Organizational Advocacy

- 23. Epilepsy Education Everywhere

- Meghan Kennedy

- 24. Hope for a Brighter Tomorrow

- Phil and Jill Gattone

- 25. Making a Difference

- Laurie Kelly

- 26. My Journey as an Advocate for People With Epilepsy

- Mary MacLeish

- 27. Making Changes in the World

- Kevin Malone

- 28. The Light of Our Lives

- Kari Luther Rosbeck

- 29. Moving the Field Forward

- Mary Anne Meskis

- 30. My Path to Advocacy

- Deb McGrath

- 31. Diagnosis of Uncertainty to Positive Impact

- Jessica Veach

- Section 6: Rare Forms of Epilepsy

- 32. Together there is Hope

- Lisa Dunn Soeby

- 33. Esmé's Journey

- Hillary Savoie

- 34. Family, Advocacy, and Tracking Seizures

- Rob and Lisa Moss

- 35. Advocacy Takes Many Forms

- Barbara Swoyer

- 36. Hope for Many

- Ilene Miller

- 37. Hope for Better Options

- Seth Wohlberg

- Section 7: Sports / Athletics

- 38. Climbing My Personal Mountain

- John Tom Olson

- 39. Strength, Epilepsy, and Advocacy

- Chanda Gunn

- 40. Running to End Epilepsy

- Loren Zitomersky

- Section 8: SUDEP

- 41. Telling Christopher's Story

- Jeanne Donalty

- 42. Change, Meaning, and Purpose

- Linda Coughlin-Brooks

- 43. Chelsea's Circle

- Julie L. Hutchison

- 44. Go and Enjoy Your Life

- Mike Stanton

- Section 9: Writing and Arts

- 45. Advocacy Through Informed Writing

- Phylis Feiner Johnson

- 46. Becoming an Epilepsy Advocate

- Nathan Plung

- 47. My Journey with Calvin

- Christy Shake

- 48. When the Spirit Catches You

- Cynthia Folio

- Conclusion

- Glossary

Über Autor(innen)

Linda Sudlesky is an Instructional Designer at the University of Massachusetts Boston, an artist, an advocate, and a person with epilepsy. She also works as a community support staff and advocate for people with intellectual disabilities. She has done community education on epilepsy, serves as a volunteer for Citizens United for Research in Epilepsy (CURE) and as a committee member for 1:26 Art of Epilepsy, Boston.

Dr. Steven Schachter is the Chief Academic Officer for the Consortia for Improving Medicine with Innovation & Technology (CIMIT) and a Professor of Neurology at Harvard Medical School. He has published over 250 articles and chapters and edited or written 35 books. He is the founding editor and editor-in-chief of the medical journals Epilepsy & Behavior and Epilepsy & Behavior Case Reports.