Don’t let people make decisions that will affect your life without giving your input. Public policy is when the government attempts to address a public issue. Some people think “I don’t understand politics. I don’t know how to get involved.” Others think, “My voice won’t really be heard.” There are many reasons why people do not advocate for themselves. However, public policy advocacy is important because it affects your everyday life. People with epilepsy could be affected by public policy in school environments or on the job, in situations involving public transportation, access to health insurance, and even the criminal justice system.
Our goal is to ensure that people with epilepsy have access to essential services, that their rights as individuals with epilepsy are protected, and that optimal treatment of epilepsy is promoted.
The EAWCP advocates for...
“Share your story with someone. You never know how one sentence of your life story could inspire someone to rewrite their own.” – Demi Lovato
Legislators find personal stories from their constituents to be very powerful. One way to make your voice heard and fight for the rights of people who have epilepsy is to contact your legislators. Our elected representatives need to know how epilepsy has affected your life in order to make informed decisions about legislative matters related to disability issues and making funding available for local services. Not sure who your legislators are? You can go to find your legislator, and type in your zip code or select your county. This will show you who your Senator and Representative for the Pennsylvania Legislature are. If you click on their name, you will find their phone numbers, links to their personal websites, personal information about them, and information about what committees they sit on. You can write them a letter about why they should support the epilepsy community, or call the office and ask to meet with your legislator and share your thoughts in person.
Each spring, families from across the state gather in Harrisburg for our Share Your Story/PA Public Policy Conference. The conference begins Sunday night with dinner and a chance to meet your fellow advocates. Monday is spent learning all about how legislation in Pennsylvania affects people with epilepsy and practicing sharing your personal story of how epilepsy has affected your life. On Tuesday, we travel to the State Capitol in Harrisburg to meet with all of the legislators to tell them why it is important to support the epilepsy community. If you are unsure how to share your story with legislators, want to meet other epilepsy advocates from across the state, or just want to make sure that your voice is heard, contact Andrea at firstname.lastname@example.org to learn more!
Whether you are willing to be an advocate or would like to follow along with what we are doing, we ask that you share your stories with us. Perhaps you have had your medication switched by your pharmacist without your knowledge, then suffered a breakthrough seizure soon after. Or maybe you have a particular EAWCP program in your area that you love and do not want to see it cut due to a lack of funding. Or maybe you have struggled with your school district in getting your child who has epilepsy the proper education that he deserves. All of these issues need to be put into the spotlight! Please send any personal stories to email@example.com.