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Become an Epilepsy Advocate!

AdvocateAnyone 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?

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•  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

17 Comments

  1. We would love to include you as a partner or supporter of Epilepsy Awareness Day Disneyland Resort November 7, 2013. Feel free to email me or Candy2013ead@epilepsyawaressday.org thank you

    Reply
  2. Hi I’m thinking about being an advocate for epilepsy an i love the ideas on this page some towns make fun of ppl with seizures an don’t understand how they really affect ppl.thank you.I’ve been seizure free since 09 bebe is a nickname i use onn here sometimes.bethany is my first name.i have a good heart an some day hope to help others like me my dr called mine seizure disorder i don’t mind sharing my story.hugs an prayers i cann give a reference if needed.

    Reply
  3. my girlfriend had epilepsy and sadly passed away in june of 2012 at home she had a major seizure and choked on her own vomit we knew each other for 20 years she was only 38 when she passed

    Reply
  4. I had epilepsy surgery in 2000, I am now seizure free and I would like to change my career to Epilepsy Advocate, others need to hear this story face to face. Is there any job that I can appl for in Athens, GA?

    Reply
    • Hello my name is Naomi and I am a person with epilepsy.
      Epilepsy and I fight often but I will always have the last word.
      I am on SSI and I would like to become an advocate. I live in Washington State and very close to Idaho.
      I see your post and may I ask you if u did become an advocate?
      If so how did you go about it and as an advocate where did u find your info to help the family or the person with epilepsy. I am also from the medical field.
      Any info would be greatly appreciate it.
      Thank you, Naomi

  5. Hi my name’s Elizabeth but I go by Betsy, I have Epilepsy Seziure Disorder and I’ve had this my whole life but didn’t know about it until I was 18. Now 7 years later with Epilepsy I’ve been through so much experienced so much…getting picked on because of my disorder, the fear of having a seizure, not knowing what would happen to me because my seizures were so bad at first. I’m happy to say now I’m one year seziure free and to someone who has epilepsy even one month is a big accomplishment. I want to become an advocate for the people who just realized they have Epilepsy but don’t want to believe it. I want to help people overcome that fear of Epilepsy…this is my career goal and I want to held make a difference.

    Reply
  6. I am currently an ambassador for purple day epilepsy awareness, I am part of my epilepsy team, I would love to became an advocate for epilepsy awareness and be volunteer in your organization. I am in the Polk area. I have give many epilepsy awareness speeches.
    My son was diagnose with epilepsy 6 years ago.

    Reply
  7. I am currently recovering from 2 rare brain surgeries. My seizures started when I was diagnosed with viral encephalitis. I have had seizures for 28 years and hopefully surgery was the answer. I plan to help kids and parents in the future with seizures. I know how hard it is to get though school and explain what a seizure is like and for a parent I would like to let them know what they can do for their child.

    Reply
  8. He my name is Richie Trevino and I’ve had epilepsy for 42 years now, my sister, cousin and auntie have all died from this. There is no counseling or support here in Albuquerque New Mexico and I really would love to help! There’s cancer and diabetes and ptsd but no epilepsy and I think we need more! Please message me on how I can set up some kind of fund raising, support and just information I am tired of being ignored!

    Reply
  9. Good morning,

    I found this site looking for a place to become a advocate, I have been epileptic for 23 years. I tried multiple medicines, home remedies, and various treatments for my seizures. I have had 5 strokes and i am very grateful to still be alive This past September I had phase 1 and phase 2 surgery to help stop the seizures all together but everything did not go as planned, phase 1 was very good but phase 2 to remove the piece of my brain where the seizures and strokes start caused me to have another stroke during surgery. Learning how to walk and write all over again has been hard but very rewarding to know that i am making my son’s very proud of me, and to be told that i am someone’s inspiration because i did not give up is great. Please let me know what type of person that you are looking for to become an advocate.

    Reply
  10. Hi, I’m looking for help to start my “OWN”, epilepsy group in NYC. I’ve been an epileptic since 1987. I’ve had to deal with some harsh realities in life as I’m sure we all have. I promised myself that I would inform people about this and try to help others in my situation, why is it that I never see anything on television about it? why don’t I hear anything on the radio? I do hear about heart disease, high blood pressure and other things why not epilepsy? I phoned a couple of places and asked that question and I was told because the funds are not there for it.

    If anyone can help me with any information to get myself on my feet, I would appreciate it greatly.

    Thanking you in advance for all your support

    Reply
    • Profile photo of Chuck Carmen

      Good morning and thank you for your desire to spread epilepsy awareness. As an Executive Director of a 52 year-old epilepsy non-profit agency for the last 23 years it is a difficult undertaking. I have had many, many, many come to me for advice how to start a “charity program”. First, is there other epilepsy organizations in NYC? If so I wouldn’t want to start another one, it would be very had. I would consider joining them as a volunteer and working toward your goal. Maybe help raise funds for media exposure. If you want to start an agency be clear that your mission is different than any other epilepsy organizations in your area. There are a lot of “epilepsy groups” with good intentions spread all over the country and many without a focus. Clearly define your mission and program(s) that would make you different from the others. Good luck!

      Chuck Carmen

    • Hi Cynthia,

      I go out everyday and speak with people about epilepsy, It’s a hard job and there are those who really don’t want to know and don’t care and no matter what you say and how you word it, it dosen’t matter. I was told by someone that epilepsy is just like anyother sickness and they would rather not hear about it and, what makes me think that epilepsy should be any different or what made me think that I should have any special treatment just because I had it. I never asked for special treatment just for help because it is different and I know because I live it everyday of my life.

    • Hi V,
      I want to do the same thing I want to be able to help out those like myself and help to enlighten the world about epilepsy.

  11. I got viral encephalitis, inflammation of the brain when I was 15 yrs old. Had my first Gran mal. Was put in an induced comma for two weeks. Had petite mal seizures for the next 10 year. I had auras with big minutes to be able to drive. I drove till 2012. When I had big Gran mal after petite mal. Was Deeply depressed for 20 years. I got through high school and had an associates in travel and tourism. I did internship in Disney World. In 2008 I got on Facebook looked for positive pages to change my outlook. I found several Epilepsy support groups. My first being Epilepsy Friends. Then we branched out to other groups I became administrator. I got bullied in a few groups. I decided to make my own group. My first group is almost a year old on Aug 4. My other groups are month old. I enjoy helping my Epilepsy peers. I am an Epilepsy Advocate, I also took a Medical Marijuana course at Genysisedu.org . I am now 40 years old, I am on disability since 2012. I am engaged. I enjoy my Epilepsy groups and peers. I have made so many friends I have never met before, wish I could. I have a VNS device. I cannot have surgery. I am on the newest meds for Epilepsy.

    Reply
  12. I have had epilepsy since I was 6 months old but not diagnosed until I was about 3 years old. I have had seizures while at a friends house, at school, at the bus stop, and while playing hockey. I have had convulsion seizures to just being confused and wondering around. My seizures started to escalate when I was in 7th grade while going through puberty. I understand why because of hormones etc and sleep and stress had always been a problem for me.
    One seizure I had was at the bus stop and I know seizures are something the one cannot control but when I had it I only remember getting off the ambulance but accommodations were made to from then on stop across from my house. To be honest I hated that. I felt as if I was being treated different and people in my neighborhood now knew about my condition and I felt as if I was different.
    A seizure that really upset me was one I had at a friends house. After I did, some of my friends were aware but there was one friend that ended up telling our whole grade. I think that has what stuck with me the most because how could a friend to that? Needless to say it was a let down but I overcame it.
    Fast forward to graduation from high school..I went to college, graduated on the DEAN’S list with my bachelors in Sport Management. Now I am currently finishing out my Master’s in Sport Management! I have overcome obstacles that many other people with epilepsy are not able to or do not have the support from amazing people to continue one and succeed.
    I decided during my internship during college (for my BA) that I wanted to do an internship with the Epilepsy Foundation in Rochester, MN. Home of Mayo Clinic basically. I thought I would be a great advocate since I know what it is like and that I am no longer afraid to talk about. I even have a epilepsy ribbon with the slogan “out of the shadows”. When I first talked to Epilepsy Foundation I was basically given the okay but then it went to higher ups and I was DENIED to intern for FREE! I was very frustrated that someone who knows what the disease is was denied the opportunity to help with an organization that is close to my heart and my health.
    My final thing is I want to be an advocate and with my Masters I want to work for the epilepsy foundation because I know this organization. I just want others reading this lengthy post that even if you have seizures it cant control you. Maybe in some form but people can still achieve enormous goals, just like i have. I have been seizure free (knock on wood) for over 10 years now!

    Reply
  13. Hi Ive had epilepsy since I was 18 months old! I had brain surgery and now I’m over 20 years seizure free. I’ve wrote a book that is now in some library’s and schools and colleges..My dream is to be a speaker and help others understand this illness I’ve been on local TV and Radio and in the Newspaper a few times .Our local foundation doesn’t do much .So far I’ve gotten 3 Proclamations!!

    Reply

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