Empowering Epilepsy

What it reported doing in 2024

Founded in 2014, our goal is to advance health equity and quality of life for people with epilepsy through integrated services, peer support, education, and systematic innovation in epilepsy care, grounded in research and lived experience. All of Empowering Epilepsy's programs and services were created by people who have lived experience with epilepsy. 1 in 26 people will be diagnosed with epilepsy in their lifetime. The vast majority of those living with epilepsy feel isolated and alone. They have never met or talked with anyone else who also experiences epilepsy, and they find few resources and help outside of their neurologist or epileptologist's office. That's because people in the general community do not understand that there is so much more to epilepsy than just the seizures. Empowering Epilepsy helps people with epilepsy find proactive ways to lessen their seizures, meet others who are also living with epilepsy, listen to and speak with epilepsy experts, and discover resources to empower their lives. The organization was created by Leigh Goldie, M.Ed., who grew up with Focal Impaired Awareness Seizures, and lived for 14 years with Drug Resistant Epilepsy. She felt misunderstood, anxious since she never knew when she was going to have a seizure, and helpless, as people didn't understand the multitude of effects epilepsy was having on her life. She quickly discovered other people with epilepsy were experiencing the same things. We also focus on Community Outreach efforts to educate others about our free or low cost programs and services. We hold informational booths at community events to teach the general public more about epilepsy, and connect with others who personally understand epilepsy. We also collaborate with epilepsy specialists to share our information with their patients. Our main goal centers around education, which we feel is the key to our clients' success. Teaching more about how knowledge, exercise, socialization, and advocacy can improve their physical, mental, and social health empowers the lives of our community members. Our variety of ongoing programs and services throughout the year that include Art Therapy Classes, Functional Fitness Classes, Bowling Parties, Pottery Painting Parties, Support Groups, Conferences, and more, offer opportunities for people with epilepsy to learn, interact, and grow. Empowering Epilepsy created and developed our 4 Step Patient Education Program to walk with people and their loved ones throughout their epilepsy journey. We focus on helping people living with epilepsy right now. The program directly helps patients and their loved ones learn more as they navigate the course of their journey. We provide a variety of educational experiences that are personalized to each individual person's diagnosis and treatment plan. Most importantly, we focus on showing people with epilepsy what they can do. Our Patient Education Program consists of 4 essential steps: 1.Client Intake - We assess where a person currently is in their epilepsy journey. Are they seeing an epileptologist - a neurologist who specializes in treating epilepsy and seizures. Are they being seen at a Level 3 or 4 Epilepsy Center? How can they collect seizure data to provide to their doctors? 2.Patient Education Program - We have designed a one of a kind Patient Education Program Folder used to teach people with epilepsy more about their epilepsy diagnosis and treatment plan. Educational inserts have been authored by some of the top epilepsy specialists in the country, and are personalized to each community member, based on their specific diagnosis and treatment plan. Teaching them how to better talk to their doctor, and providing more detail about what they are experiencing can help them receive a more accurate diagnosis and treatment plan sooner. 3.Monthly Age Based Virtual Support Groups include an hour of Q & A with an epilepsy specialist from a Level 3 or 4 Epilepsy Center from Northeast Ohio, and across the cou

Financial Efficiency

• Mission deployment rate: 100%; rating input score 100
• Program expense ratio: 86.1%; rating input score 86
• Fundraising efficiency: $13.31 raised per $1 spent on fundraising; rating input score 47; 47th percentile among comparable filings

Transparency & Controls

• Consistency checks: 92.9%; rating input score 93; 25th percentile among comparable filings
• Pay-setting controls: Limited
• Foreign activity oversight: Limited
• Grant itemization coverage: Limited
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
• Governance controls: 5 of 8 controls in place; rating input score 62
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: NotApplicable
  • Other executive compensation review process: Fail
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Missing
  • Independent financial-statement audit: Fail

Sustainability

• Operating margin: -18.9%; rating input score 15; 15th percentile among comparable filings
• Total-asset coverage ratio: 1.16; rating input score 45; 45th percentile among comparable filings
• Liabilities to assets ratio: 0.03; rating input score 36; 36th percentile among comparable filings
• Officer compensation ratio: 22.8%; rating input score 16; 16th percentile among comparable filings

Growth

• Program expense growth: 29% per year; rating input score 100; 90th percentile among comparable filings
• Revenue growth: 24.4% per year; rating input score 100; 91st percentile among comparable filings
• Asset growth: 34.4% per year; rating input score 100; 93rd percentile among comparable filings