Anyone with epilepsy or who has epilepsy in the family will often tell you that the greatest support and comfort comes from talking to other people who share their own epilepsy experience. There is a growing community of people called ‘Epilepsy Advocates’ who share their own stories, experience with different treatment options and offer invaluable support to other epilepsy sufferers and their families.
Sharing Your Story
Epilepsy advocates are people who live with epilepsy, either suffering from seizures themselves or providing care and support for someone who does. Each advocate has made a personal commitment to share their story in the hope that they can provide information, insight and support as well as inspiration to others that suffer from seizures. Their overriding message is that epilepsy is just something that you have, but it doesn’t define who you are.
ADVOCATE FOR EPILEPSY:
Contact your local epilepsy services provider to see how you can help! Helping a local, not-for-profit epilepsy services provider is a GREAT way to get involved as an epilepsy advocate. Assistance from volunteers (like YOU!) help the epilepsy services organizations across the country (and world) run thousands of epilepsy awareness/fundraiser events each year.
In the state of Florida (Where our parent organization, The Epilepsy Association of Central Florida) is located, there are hundreds of events each year, and in Central Florida, we have the Orlando Epilepsy Walk, the Brevard County Epilepsy Walk, and The Central Florida Auto Dealers Association Golf Tournament EVERY YEAR on top of many smaller events!
The Florida Department of Health provides a contact list to Florida’s Epilepsy Service Providers – check this list for your local organization if you live in Florida, if not, it is likely that your stat’s department of health has a similar list!
Finally, below are some general, helpful steps to become an advocate for a specific issue that you or a friend/loved one may face!
STEPS TO ADVOCACY:
- 1. Identify the current problem
- • What is the issue or disagreement?
- • What is needed?
- • What do I specifically want?
- • What does the other side want?
- 2. Obtain complete information
- • Look at and obtain copies of records, evaluations, etc.
- • Know the laws, regulations, and policies
- • Obtain an independent evaluation if necessary
- 3. Look at it from the viewpoint of the other side
- • What do they want and why?
- • Try to understand their arguments
- • How does the their viewpoint differ from mine?
- 4. Make contacts
- • People with disabilities and their families
- • Other disability advocates or professionals
- • Psychologists, physicians, therapists and counselors
- 5. Talk with someone else before a meeting. It helps to:
- • Gain a different perspective
- • Organize one’s thoughts and arguments
- • “Blow off steam” and calm oneself
- 6. Make a plan
- • What am I going to do?
- • Who is going to do what, when, when, and where?
- • Whom am I going to contact, and how will I approach them?
- • What are my goals and what am I prepared to settle for?
- • Are letters necessary?
- • Is a meeting needed?
- 7. What are the alternatives?
- • Look at all alternative solutions (talk to others)
- 8. TAKE ACTION
- • Be persistent
- • Use efficient communication
- • Follow through
- If you have any questions, don’t hesitate to contact the Epilepsy Association of Central Florida! 407-422-1416