Visions

The Inspirational Journeys of Epilepsy Advocates

Edited by Linda Sudlesky,M.Ed and Steven C. Schachter,MD

Chronicles the inspiring stories of nearly 50 epilepsy advocates
Empowers people affected by epilepsy
Includes images of advocates and advocacy in action

Visions

The Inspirational Journeys of Epilepsy Advocates

Edited by Linda Sudlesky,M.Ed and Steven C. Schachter,MD

Description

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.

Visions

The Inspirational Journeys of Epilepsy Advocates

Edited by Linda Sudlesky,M.Ed and Steven C. Schachter,MD

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

Visions

The Inspirational Journeys of Epilepsy Advocates

Edited by Linda Sudlesky,M.Ed and Steven C. Schachter,MD

Author Information

Edited by Linda Sudlesky, M.Ed, University of Massachusetts Boston, and Edited by Steven C. Schachter, MD, Chief Academic Officer, Center for Integration of Medicine & Innovative

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.

Contributors:

Jim Abrahams
Foundation for Ketogenic Therapies

Susan Arthurs
The Alliance for Epilepsy Research

Joan Austin
Indiana University

Patricia Barnes
Creator, Kevin's Pyramids

Joyce Bender
Bender Consulting Services

Meg Busing
Midwest You Can Foundation and Camp You Can

Kelly Cervantes
Citizens United for Research in Epilepsy

Tony Coehlo
Board of Directors, Epilepsy Foundation

Linda Coughlin Brooks
SUDEP awareness advocate

Jeanne Donalty
SUDEP awareness advocate

Phylis Feiner Johnson
Epilepsytalk.com

Cynthia Folio
Temple University

Phil and Jill Gattone
Epilepsy Foundation

Chanda Gunn
Epilepsy Foundation New England

Julie and Doug Hutchison
Chelsea Hutchison Foundation

Catherine Jacobson
Director of Clinical Research, Tilray

Monika Jones
Brain Recovery Project

Debra Josephs
Anita Kaufmann Foundation

Ken Kaufman
Department of Psychiatry
Rutgers University

Laurie Kelly
Volunteer for Epilepsy Foundation of Virginia

Meghan Kennedy
Epilepsy Education Everywhere

Sookyong Koh
Department of Pediatrics
Emory University School of Medicine

Ken Lowenberg
Talk About it!

Mary Macleish
Epilepsy Foundation of Arizona

Kevin Malone
Former member, Epilepsy Therapy Project Board of Directors

Amanda Marrazzo
Lou Bird 5K for epilepsy

Deb McGrath
Epilepsy Foundation of Kentuckiana

Cassidy Megan
Purple Day for Epilepsy Awareness

Mary Anne Meskis
Dravet Syndrome Foundation

Eric Miller
Former organizer, Candlelight Concerts for Epilepsy Awareness

Ilene Miller
Hope for Hypothalamic Hamartomas

Lisa Moss
Seizuretracker

John Olsen
Climber for awareness and health

Brandy Parker McFadden
My Epilepsy Story

Nathan Plung
Hidden Truths Project Artist

Kari Rosbeck
TS Alliance

Bill and Susie Rosenfeld
Sharon's Ride. Run. Walk.

Hillary Savoie
Cute Syndrome Foundation

Allison and Jon Scheinman
Livy's Hope / Epilepsy Foundation

Christy Shake
Calvin's Story blog

Brien Smith
Ohio Health Neuroscience

Lisa Soeby
Hope for Hypothalamic Hamartomas

Mike Stanton
Danny Did Foundation

Barbara Swoyer
Dravet Syndrome/epilepsy advocate

Julie Thompson-Dobkin
Kant Institute and Hidden Truths Project

Jessica Veach
Epilepsy Foundation Northwest

Seth Wohlberg
RE Childrens Project

Loren Zitomersky
Runs, bikes, and hikes for awareness and fundraising