Visions

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 Unexplained 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.

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.

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