2025-10-28T07:13:55-07:00 2024-12-31 993444154 Nudelman & Associates Inc 9821 Olde 8 Road Suite O Northfield OH 44067 990 2024-01-01 471250482 Empowering Epilepsy EMPO 2163424167 23500 Mercantile Rd Ste D Beachwood OH 44122 Leigh Goldie Executive Director 2165365889 2025-10-20 true true Roger B Nudelman CPA P00106449 2342472180 2024 2025-03-06 01:10:19Z Leigh Goldie 421229 false X www.empoweringepilepsy.org X 2014 OH Empowering Epilepsy connects people with epilepsy to experts and peers for education, care, and friendship. We anchor a caring community that empowers our members and their loved ones to better understand and manage their treatment plan throughout their epilepsy journey. 23 23 4 200 0 102208 264532 22777 912 52185 15550 1480 -12334 178650 268660 0 0 147522 139340 0 19881 141695 179997 289217 319337 -110567 -50677 526392 371868 133838 12719 392554 359149 Empowering Epilepsy connects people with epilepsy to experts and peers for education, care, and friendship. We anchor a caring community that empowers our members and their loved ones to better understand and manage their treatment plan throughout their epilepsy journey. false false 275068 912 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 country, and an hour of talk time with other people in their age group who are living with epilepsy. Epilepsy Specialists answer general questions about epilepsy and seizures in the first hour. The second hour consists of meeting others in their age group who are sharing their experiences. Meeting others who are sharing their experiences, and receiving validation that there is so much more to epilepsy than just the seizures is empowering. The Support Groups are offered virtually or in person so anyone from anywhere can attend. They also don't have to drive to get there, as many people with drug resistant epilepsy cannot drive. In addition to many participants from Northeast Ohio, we have many participants from across the country and the world joining to learn more. 4. We hold three annual Educational Conferences with top epilepsy specialists from across the country teaching more about epilepsy and seizures to people with epilepsy and their loved ones. We hold the following conferences annually: A.Brain Surgery Conference in June - The goal is to better explain that Brain Surgery for Epilepsy is an option for those living with focal seizures, but many people with epilepsy don't learn about surgical options until many years after their diagnosis. Epilepsy Specialists answer the following questions: What is brain surgery for epilepsy? Who is a surgical candidate? What different types of surgeries and medical devices are available for people with epilepsy? What does it mean if I have a 50% chance of being seizure free? We also feature a panel discussion from Brain Surgery Survivors to share their journey with Brain Surgery for Epilepsy. B.SUDEP Action Day Talk in October - Sudden Unexpected Death in Epilepsy (SUDEP) is when an otherwise healthy person with epilepsy dies and there is no other cause of death such as accident, illness, injury, or drowning. Many people with epilepsy are found lying face down in their bed, and until recently, epilepsy was not listed as an official cause of death. We want to proactively educate people with epilepsy, their loved ones, and the general community, including medical examiners, about SUDEP. Epileptologists address who is most at risk, and what proactive steps people with epilepsy or neurologists can take to help reduce that risk. Approximately 1 in 1000 people with epilepsy die from SUDEP each year. Since Empowering Epilepsy opened in 2014, we have lost 18 Empowering Epilepsy Community Members to SUDEP, accident, injury, or suicide. C.Empower Your Life Conference - An annual full day conference that teaches people with epilepsy and their loved ones all about epilepsy and seizures. Featuring some of the top epilepsy specialists in the country, we cover topics like Epilepsy 101 - All About Epilepsy and Seizures, Epilepsy Testing, The Psychology of Epilepsy, Epilepsy Surgery, Epilepsy and Exercise, Epilepsy and Diet, and more. We provide 150 Patient Education Program Meetings per year that last between 1 - 2 hours in person or via Zoom. We have helped thousands of people in the past year by talking to them along with their loved ones about their epilepsy, providing resources by mail or our website, and referring them to epilepsy specialists in their area. We donate 350 Epilepsy Monitoring Unit Gift Bags to people staying multiple days in the Epilepsy Monitoring Units of Level 3 or 4 Epilepsy Centers in Northeast Ohio. 9 Epilepsy Centers throughout Northeast and Central Ohio receive them to keep them occupied while staying in the EMU, and educate them about Empowering Epilepsy's free or low cost programs and services. Empowering Epilepsy also offers many opportunities for our community members to learn from each other, support each other, and discover strategies to take better care of themselves. These events help improve their mental, physical, and social health. We hold annual Bowling Parties and Pottery Painting Parties to bring people in different Northeast Ohio communities together, and create positive, lasting memories in a laid back environment. We hold fundraising events that highlight the abilities of people with epilepsy. We include our community members as volunteers or participants to foster their sense of community and inclusion. We hold weekly Functional Fitness Classes at Empowering Epilepsy Headquarters. Functional Fitness, led by a certified personal trainer who personally understands epilepsy, provides a personalized guidance to our participants on how they can improve their cardiovascular and muscle strength. People with epilepsy are often told that they can't exercise, as it could cause seizures. We show them how they can exercise effectively. Art Therapy Classes are held bi-monthly at Empowering Epilepsy Headquarters, and are led by a Licensed Professional Art Therapist who is also a Licensed Professional Clinical Counselor and an epilepsy survivor. These classes help people with epilepsy illustrate their artistic flare and discover what they can do while liv 275068 true true false false false false false false false false true false false false false false false false false false false false false false true false false false false false false false false false false false false false false false false false false false false false false true 6 0 true 4 true false false false false false false false 0 false false false false false false false X 23 23 false false false false false false false true false false false true true true false true true true false false OH X X X Leigh Goldie 2163424167 23500 Mercantile Rd Ste D Beachwood OH 441225914 LEIGH GOLDIE Executive Dir. 50.00 0.00 X 72685 0 0 MICHELLE ALTSHULER Trustee 1.00 0.00 X 0 0 0 TYLER AMICK President 3.00 0.00 X X 0 0 0 ANA ARENIVAS PHD Trustee 1.00 0.00 X 0 0 0 KAYELA ARROTA PHD Trustee 1.00 0.00 X 0 0 0 DANIELLE BECKER MD Trustee 1.00 0.00 X 0 0 0 BART BENEDICT Trustee 1.00 0.00 X 0 0 0 PATRICK BROWN MD Trustee 1.00 0.00 X 0 0 0 STEPHEN HANTUS MD Trustee 1.00 0.00 X 0 0 0 MICHAEL KOHRMAN MD Trustee 1.00 0.00 X 0 0 0 PRAKASH KOTAGAL MD Trustee 1.00 0.00 X 0 0 0 DIANNE KULASA-LUKE MSN APRN-CNP Trustee 1.00 0.00 X 0 0 0 HEATHER LESTER Vice President 3.00 0.00 X X 0 0 0 ANDREW LATIMER Treasurer 3.00 0.00 X X 0 0 0 DEEPAK LACHHWANI MD Trustee 1.00 0.00 X 0 0 0 HOLLY MAGGIANO MD Trustee 3.00 0.00 X 0 0 0 AHSAN MOOSA NADUVIL VALAPPIL MD Trustee 1.00 0.00 X 0 0 0 IMAD NAJM MD Trustee 1.00 0.00 X 0 0 0 ELIA PESTANA KNIGHT MD Trustee 1.00 0.00 X 0 0 0 VINEET PUNIA MD Trustee 1.00 0.00 X 0 0 0 MARVIN ROSSI MD Trustee 1.00 0.00 X 0 0 0 LAWRENCE SEIDEN MD Trustee 1.00 0.00 X 0 0 0 MICHAEL STERGIOU Trustee 3.00 0.00 X 0 0 0 72685 0 false false false 0 2378 262154 264532 PROGRAM SERVICE FEES 624110 912 912 912 12611 12611 0 0 0 122050 3033 122144 -94 3033 2939 2939 17216 2378 30425 -13209 0 0 REDEEMED STATEMENT CREDITS 900099 875 875 875 268660 1787 15550 0 0 0 0 72685 61782 7269 3634 0 56753 48240 5675 2838 0 0 9902 8417 990 495 0 3705 2594 1111 6300 4410 1890 0 0 0 21028 20772 171 85 9956 5743 61 4152 14517 10495 1410 2612 5134 3315 410 1409 0 27421 22185 3659 1577 7513 7513 0 6647 6475 118 54 0 0 6957 5636 904 417 1525 1235 198 92 PROGRAM SUPPLIES AND EXPENSES 42263 42263 Printing and Publications 22710 21771 180 759 REPAIRS & MAINTENANCE 2451 1985 319 147 DUES AND MEMBERSHIPS 1870 237 23 1610 0 319337 275068 24388 19881 22215 15642 146085 3247 10522 32 0 0 0 0 5191 3251 40628 24609 22976 16019 315113 312639 0 0 0 14812 10516 526392 371868 7696 12719 126141 1 133838 12719 X 236701 359149 155853 392554 359149 526392 371868 -50677 17272 X false false false X 90166 349182 486347 125108 262154 1312957 0 0 90166 349182 486347 125108 262154 1312957 820659 492298 2147 7237 7590 12611 29585 0 125 81 501 875 1582 1344124 0.36630 0.33940 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 33746 18560 15186 6882 6049 833 16019 X X X X X X X false OH FUNDRAISING EVENTS 19594 2378 17216 9122 4951 16352 19594 2378 17216 9122 4951 16352 30425 -13209 Form 990, Part VI, Section A, Line 1a THE ORGANIZATION'S CODE OF REGULATIONS PROVIDE FOR AN EXECUTIVE COMMITTEE COMPRISED OF A MINIMUM OF FIVE MEMBERS INCLUDING THE FOLLOWING OFFICERS: EXECUTIVE DIRECTOR, PRESIDENT, VICE-PRESIDENT, SECRETARY, AND TREASURER. THE CODE OF REGULATIONS PROVIDE THE EXECUTIVE COMMITTEE WITH THE AUTHORITY TO ACT ON BEHALF OF THE ORGANIZATION SUBJECT TO FINAL RATIFICATION OF ITS ACTS BY THE BOARD. THIS DELEGATION DOES NOT RELIEVE THE BOARD OF ANY OF ITS RESPONSIBILITIES IMPOSED BY LAW, AND THE EXECUTIVE COMMITTEE ENDEAVORS TO LIMIT ITS EXERCISE OF AUTHORITY TO TIME SENSITIVE ISSUES. Form 990, Part VI, Section B, Line 11b THE FORM 990 IS REVIEWED AND APPROVED BY THE MEMBERS OF THE BOARD PRIOR TO FILING. Form 990, Part VI, Section B, Line 15a COMPENSATION CHANGES FOR THE EXECUTIVE DIRECTOR ARE INITIATED BY THE BOARD OF DIRECTORS. DISCUSSION AND A FORMAL VOTE ARE UNDERTAKEN BEFORE ANY COMPENSATION CHANGES CAN OCCUR. Form 990, Part VI, Section C, Line 19 EMPOWERING EPILEPSY'S FORM 990 IS PUBLICLY AVAILABLE ON OUR WEBSITE. THE CERTIFICATE OF FORMATION IS AVAILABLE FROM THE OHIO SECRETARY OF STATE AND OTHER GOVERNING DOCUMENTS ARE MADE AVAILABLE AS REQUIRED BY STATE LAW. FORM 1023 AND THE CONFLICT OF INTEREST POLICY ARE NOT PUBLISHED ONLINE BUT ARE AVAILABLE TO THE PUBLIC UPON REQUEST. FORM 990, PART I, LINE 6 VOLUNTEERS Empowering Epilepsy has over 200 individuals who have volunteered and provided over 1,500 hours at one of over 30 Health and Wellness Fair Booths throughout Northeast Ohio, distributed informational flyers to locations in their communities, helped us organize Epilepsy Monitoring Unit Gift Bags to donate to people with epilepsy staying in the Epilepsy Monitoring Unit of a Level 3 or 4 Epilepsy Center, volunteered at fundraising events including our Gunselman's Leprechaun Chase 5K and our team in the Cleveland Marathon. organized inserts for our Patient Education Program Folders, helped run support groups, and have volunteered to create their own fundraisers, including 2 Eagle Scouts who live with epilepsy. Many of our volunteers include over 75 Epilepsy Specialists who author Patient Education Program Folder Educational Inserts, lead an hour of Q & A for our Age Based Virtual Support Groups, and/or speak at one of our educational conferences. Epilepsy Specialists are also referring patients to help them meet others who understand epilepsy and learn more about their diagnosis and treatment plan.