Epilepsy Advocacy Champions 

Epilepsy Advocacy Champions are trained, high-level (grasstops) advocacy volunteers for the Epilepsy Foundation. By building and maintaining strong relationships with their members of Congress and state legislators, Epilepsy Advocacy Champions help advance the Foundation’s policy priorities to overcome the challenges of living with epilepsy and accelerate therapies to stop seizures, find cures and save lives. The Advocacy Champions also serve an integral role by sharing their personal story and being a connector and recruiter of grassroots advocates in their state.

Apply to be an Epilepsy Advocacy Champion! 

Responsibilities: 

  • Establish and maintain strong relationships with members of Congress and state elected officials and their staff by educating and engaging with them on important policy issues concerning the epilepsy community. Some of this is done through regular calls-to-action from the Foundation utilizing multiple communication strategies (e.g., email, phone, social media)
  • Monitor and track your federal and state elected officials’ activities and public events 
  • Attend at least 1 in-district meeting with each member of Congress per year
  • Be willing to share your personal story through a variety of means including media and testifying before government entities
  • Communicate and coordinate with national and local Epilepsy Foundation staff on a regular basis about interactions and progress with elected officials
  • Promote the Foundation and its policy priorities within your local community
  • Be an ambassador for the Foundation’s advocacy and help expand the network of local advocates to increase the epilepsy community’s presence in a state or district 
  • Actively participate in monthly briefings/training webinars and complete monthly advocacy activity 
  • Log hours and report advocacy activities and outcomes in VolunteerHub on a monthly basis
  • Participate in local Epilepsy Foundation office events (if applicable)
  • Connect and coordinate with other key Foundation volunteers including Teens Speak Up! participants, additional Advocacy Champions in the state (if applicable), and/or volunteers in other mission areas

Qualifications:

  • Passionate about driving systemic change through advocacy (no prior government relations or policy experience necessary) and a willingness to share your story 
  • Responsible and accountable
  • Ability to work individually and collaboratively 
  • Experience with social media platforms 
  • Knowledge of the epilepsies and the Epilepsy Foundation or willingness to learn
  • The Champion program is open to anyone over the age of 18 who is living with or has a personal or professional connection to the epilepsies

Benefits: 

  • Opportunity to learn about the legislative process and epilepsy community policy priorities
  • Advance public policy that helps people affected by the epilepsies and increase awareness of the epilepsies and the Foundation
  • Be a part of a passionate team and meet other advocate leaders
  • Be eligible to attend an advocacy conference in Washington, D.C. and advocate on Capitol Hill 

Time Commitment:

  • Two-year term with possibility of renewal
  • Complete a monthly advocacy activity and training (subject to change)
  • Approximately 5-10 hours per month (some months may vary more or less depending on legislative cycles) 

Process, Trainings and Resources:

  • Complete online application form, phone interview, and background check through VolunteerHub
  • If selected, Champions will need to complete a general volunteer orientation/ onboarding session (approx. 1 hour) and seizure first-aid certification training (free). 
  • If selected, the Epilepsy Foundation national advocacy team will provide additional resources, specialized trainings, and support to prepare Champions to be effective advocates, communicate efficiently, and be able to professionally conduct meetings with elected officials. If applicable, the local Epilepsy Foundation will also serve as a resource and connection point.

Learn more about the role by reviewing the description below. 

Apply to be an Epilepsy Advocacy Champion! 

Authored By: 
Britt Dorfman
Authored Date: 
10/2020