Epilepsy Alliance Florida
The Power of Local
Epilepsy Alliance Florida
EIN: 59-2164525
as of September 2023
as of September 18, 2023
Mission
Epilepsy Alliance Florida is dedicated to supporting those impacted by epilepsy by confronting the spectrum of challenges created by seizures.
Ruling year
1972
President & CEO
Ms. Karen Basha Egozi
Main address
7300 N. Kendall Drive Suite 760
Miami, FL 33156 USA
EIN
59-2164525
Epilepsy
Population served
Children and youth
Adults
NTEE code
Epilepsy (G54)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Tax forms
Communication
Programs and results
Reports and documents
Download annual reportsWhat we aim to solve
On July 22, 2018, the organization changed its name to Epilepsy Florida from Epilepsy Foundation of Florida. The name change came because of disaffiliation with the national Epilepsy Foundation. Our board made the necessary decision not to renew our affiliation with the Epilepsy Foundation and embark on this exciting new chapter in our organization’s 47-year history. While years were spent deliberating the change and its impact on the organization, it came abruptly and without a clear communication plan. Our mission has always been and remains clear — to provide resources, programs, support, and hope for the over 400,000 Floridians living with epilepsy and their caregivers. That mission has diverged in recent years from the Epilepsy Foundation of America, as that organization sought to focus on research and other priorities.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Case Management Services
The Case Management Program provides individuals with seizures and their families with an Individualized Plan of Care (IPOC) tailored to the individual and family's specific needs.
1. Initial comprehensive assessment of the client’s needs.
2. Development of a comprehensive Individualized Plan of Care.
3. Coordination of services required to implement the plan.
4. Monitoring to assess the efficacy of the plan.
5. Periodic re-evaluation and revision of the plan as necessary over the client's life.
Adult, Parent and Teen Support Groups
Support Groups meet monthly for Adults with epilepsy, parents of children with epilepsy, and teens with epilepsy. YAC program.
Prevention/Education
Epilepsy Alliance Florida offers comprehensive prevention and education services throughout Florida in English, Spanish and Creole languages. Presentations regularly include Schools (personnel and students), professionals throughout the community, including physicians and attorneys, police, emergency medical services personnel, health care professionals, community-based organizations with particular emphasis on health and social service agencies, and providers, such as daycare centers.
Telemedicine
Epilepsy Alliance Florida now provides you with the convenience of bringing the doctor to you via virtual technology. Epilepsy Florida is happy to introduce Telemedicine Neurological Virtual Doctor Consults as part of our services. We use a web-based HIPAA compliant software platform as easy as clicking on a link. You can access it thru your computer or any smart device like your mobile phone, laptop, or tablet. Our goal is to ensure that this service we provide to those with seizures is as user-friendly as possible. We have partnered with some of the best medical providers statewide with an accurate understanding of Epilepsy and its effects. Our Telemedicine team ensures that the patient and doctor have a seamless connection and knowledge of the software platform.
Medical Services
Epilepsy Alliance Florida`s Comprehensive Epilepsy Clinics and network of independent neurologists across the state provide a consistent program of epilepsy medical management for children and adults consisting of the following: Screening for eligibility for medical services; Initial neurological evaluation; Ongoing medical follow-ups as medically necessary; Blood monitoring of body functions and levels of anticonvulsant drugs; Electrodiagnosis (baseline electroencephalogram -EEG); Other diagnostics procedures: MRI, CT Scan, DEXA Scan, and others as medically indicated; Epilepsy Guidance and Education; Assistance with obtaining medication through various sources: DOH Pharmacy, PAP, EFL Prescription Discount Card, independent pharmaceutical providers offering medicine at a special discounted rate for EFL clients, on-line and local retail pharmacies offering specially discounted prescription plans.
Psychological Services
Epilepsy Alliance Florida offers psychological services at the Miami-Dade County, Broward County, and Palm Beach County office locations. The current program includes: Individual and family counseling (short-term, six months or less) to help with emotional or relationship difficulties, Psychological evaluations with standardized instruments of clients’ cognitive and emotional functioning, including the extent and pattern of brain dysfunction related to seizures, consultation to school personnel and families concerning learning and behavior patterns associated with epilepsy Consultation to staff concerning psychological aspects of clients’ experiences and related mental health concerns (this includes interpretation of standardized self-report psychological inventory taken by all clients)
Healthcare Enrollment Assistance
The Healthcare Navigation Program at Epilepsy Alliance Florida is a federally certified healthcare enrollment program that provides in-person education, counseling, and enrollment assistance to Floridians wanting to shop and enroll for health coverage or have questions concerning their health insurance.
Seizure Dog Scholarship
Acknowledging the strong interest in seizure response dogs for persons with epilepsy and the high cost associated with the purchase of this type of highly trained dog, Epilepsy Alliance Florida has begun a Scholarship Fund to assist individuals/families who are in the process of purchasing a seizure response dog.
Each approved individual/family will be awarded money in scholarship funds.
Where we work
Awards
Standards of Excellence 2009
Epilepsy Foundation of America
Sapphire Award for Excellence 2007
Blue Cross Blue Shield of Florida
Affiliations & memberships
Epilepsy Alliance of America 2018
External reviews
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of timely caseworker visits
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Related Program
Case Management Services
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Number of clients served
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses, Age groups
Related Program
Case Management Services
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Number of people educated about epilepsy
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults, Children and youth, Caregivers, Families, Parents
Related Program
Prevention/Education
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Since going virtual we were able to reach many more individuals.
Number of people reached
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults, Children and youth, People with other disabilities
Related Program
Prevention/Education
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Reports and documents
Download strategic planLearn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
Epilepsy Florida aims to become the trusted resource of information for individuals and families in Florida touched by epilepsy. EFL will help raise awareness and understanding of epilepsy and develop new programs to assist the changing needs of the epilepsy community.
What are the organization's key strategies for making this happen?
With a three year strategic plan in place, we will:
Intensify online efforts in providing comprehensive information on epilepsy, available therapies, providers,
and services to more individuals, families, and professionals.
Build partnerships and increase outreach with medical professionals and organizations such as hospitals,
community-based organizations (CBOs), etc.
Develop new innovative programs for individuals with epilepsy.
Advocate on behalf of all people with epilepsy.
Grow relationships with other epilepsy service providers.
Create Educational Blogs and Webinars.
Create collateral materials for legislative leadership.
Further, develop a process to track and evaluate the quality and number of individuals impacted
by programs and services.
Implement Customer Relation Management Database System.
What are the organization's capabilities for doing this?
Epilepsy Alliance Florida has been a strong entity for 49 years in the State of Florida. We are a founding partner of Epilepsy Alliance America. We currently have over 39 professional staff members who are experts in their fields. A strong Board of Directors with over 17 members of the community and persons affected by epilepsy.
What have they accomplished so far and what's next?
We were able to accomplish all of the strategic plan items such as:
Increase social media
Conduct Educational Blogs and Webinars at least 6 a year
Created collateral materials for legislative leadership and held a capital day event in Tallahassee
Researched new innovative programs for persons with epilepsy, such as defining telehealth for epilepsy patients
We are still working on:
Develop a year-round program to engage stakeholders, potential financial supporters, lawmakers, news media, and the public to raise visibility and support across Florida. However, we have seen an increase in visibility. We are not where we want to be.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We act on the feedback we receive
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What challenges does the organization face when collecting feedback?
It is difficult to get the people we serve to respond to requests for feedback
Financials
Financial documents
Download audited financialsRevenue vs. expenses: breakdown
Liquidity in 2022 info
3.89
Months of cash in 2022 info
3.2
Fringe rate in 2022 info
17%
Funding sources info
Assets & liabilities info
Financial data
Epilepsy Alliance Florida
Balance sheetFiscal Year: Jul 01 - Jun 30
The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.
Fiscal Year: Jul 01 - Jun 30
This snapshot of Epilepsy Alliance Florida’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.
Created in partnership with
Business model indicators
| Profitability info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Unrestricted surplus (deficit) before depreciation | -$44,908 | $35,111 | $328,877 | $118,983 | $303,324 |
| As % of expenses | -1.2% | 1.2% | 9.8% | 3.5% | 7.0% |
| Unrestricted surplus (deficit) after depreciation | -$74,381 | $4,102 | $299,762 | $90,631 | $281,014 |
| As % of expenses | -2.0% | 0.1% | 8.8% | 2.6% | 6.4% |
| Revenue composition info | |||||
|---|---|---|---|---|---|
| Total revenue (unrestricted & restricted) | $3,661,893 | $2,973,769 | $3,742,264 | $3,508,796 | $4,644,061 |
| Total revenue, % change over prior year | -19.6% | -18.8% | 25.8% | -6.2% | 32.4% |
| Program services revenue | 3.8% | 0.4% | 0.3% | 0.2% | 0.2% |
| Membership dues | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Investment income | 0.0% | 0.1% | 0.1% | 0.0% | 0.0% |
| Government grants | 67.6% | 61.9% | 56.9% | 84.3% | 67.1% |
| All other grants and contributions | 28.5% | 37.5% | 42.7% | 5.2% | 24.8% |
| Other revenue | 0.0% | 0.0% | 0.0% | 10.3% | 7.8% |
| Expense composition info | |||||
|---|---|---|---|---|---|
| Total expenses before depreciation | $3,717,391 | $2,938,660 | $3,370,315 | $3,395,522 | $4,344,786 |
| Total expenses, % change over prior year | -17.4% | -20.9% | 14.7% | 0.7% | 28.0% |
| Personnel | 68.5% | 67.5% | 59.8% | 66.2% | 58.6% |
| Professional fees | 7.3% | 7.4% | 7.5% | 13.1% | 21.2% |
| Occupancy | 5.5% | 6.7% | 5.2% | 4.7% | 3.2% |
| Interest | 0.1% | 0.0% | 0.0% | 0.0% | 0.0% |
| Pass-through | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| All other expenses | 18.6% | 18.4% | 27.5% | 16.0% | 16.9% |
| Full cost components (estimated) info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Total expenses (after depreciation) | $3,746,864 | $2,969,669 | $3,399,430 | $3,423,874 | $4,367,096 |
| One month of savings | $309,783 | $244,888 | $280,860 | $282,960 | $362,066 |
| Debt principal payment | $0 | $0 | $0 | $0 | $362,532 |
| Fixed asset additions | $43,057 | $0 | $0 | $0 | $0 |
| Total full costs (estimated) | $4,099,704 | $3,214,557 | $3,680,290 | $3,706,834 | $5,091,694 |
Capital structure indicators
| Liquidity info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Months of cash | 1.1 | 1.8 | 4.6 | 4.5 | 3.2 |
| Months of cash and investments | 1.1 | 1.8 | 4.6 | 4.5 | 3.2 |
| Months of estimated liquid unrestricted net assets | 1.9 | 2.5 | 3.4 | 3.8 | 3.8 |
| Balance sheet composition info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Cash | $342,366 | $440,164 | $1,292,493 | $1,262,656 | $1,145,622 |
| Investments | $0 | $0 | $0 | $3,650 | $0 |
| Receivables | $323,230 | $239,375 | $239,196 | $474,350 | $525,603 |
| Gross land, buildings, equipment (LBE) | $426,695 | $439,962 | $430,962 | $430,962 | $437,140 |
| Accumulated depreciation (as a % of LBE) | 72.9% | 77.7% | 86.1% | 92.7% | 96.5% |
| Liabilities (as a % of assets) | 13.6% | 12.4% | 34.7% | 37.1% | 17.3% |
| Unrestricted net assets | $702,437 | $706,539 | $1,006,301 | $1,096,932 | $1,377,946 |
| Temporarily restricted net assets | $0 | $0 | N/A | N/A | N/A |
| Permanently restricted net assets | $0 | $0 | N/A | N/A | N/A |
| Total restricted net assets | $0 | $0 | $43,072 | $37,363 | $33,314 |
| Total net assets | $702,437 | $706,539 | $1,049,373 | $1,134,295 | $1,411,260 |
Key data checks
| Key data checks info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Material data errors | No | No | No | No | No |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
President & CEO
Ms. Karen Basha Egozi
Karen Basha Egozi is the President and Chief Executive Officer of Epilepsy Alliance Florida and has been working on behalf of patients with epilepsy and their families since 2005. As the organization’s chief executive, Karen manages the efforts of a team of over 50 employees in six offices throughout the state who provide direct services to citizens in 35 of Florida’s 67 counties, with statewide responsibility through the Florida Department of Health.
In 2018 to the present, Karen serves as Treasurer for the national Epilepsy Alliance America. From 2013-2015 Karen served a director on the board of Josh Provides, an organization dedicated to helping patients with epilepsy.
Prior to joining Epilepsy Alliance Florida, Karen managed a $129 million budget as the Vice President of Administration for the Early Learning Coalition Miami-Dade/Monroe, and as Chief Executive Officer of the Voices For Children Foundation, a fundraising organization dedicated to championing the Guardian Ad Litem P
Number of employees
Source: IRS Form 990
Epilepsy Alliance Florida
Officers, directors, trustees, and key employeesSOURCE: IRS Form 990
Compensation data
Epilepsy Alliance Florida
Highest paid employeesSOURCE: IRS Form 990
Compensation data
Epilepsy Alliance Florida
Board of directorsas of 04/05/2022
Board of directors data
Ms. Patricia Dean, ARNP
Nicklaus Children's Hospital
Patricia Dean, ARNP
Medical
Steve Feig
Business
A.G. "Terry" Newmyer, III
Business
Sara Widing
Medical
Adam Adache
Real Estate
Beth Alcalde
Legal
Nicholas Duran
Government
Bryan P. Filson
Finance
Carlos J. Gimenez
Legal
Melissa Hepler
Education
Dr. Hind Kettani
Medical
Joe A. Martinez
Commissioner
Daniel Perez
Government
Steve Schale
Government Affairs
Dr. Tarek Zakaria
Medical
Kevin Feig
Business
Dr. Manuel Torres
Medical
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 04/05/2022GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more
- We review compensation data across the organization (and by staff levels) to identify disparities by race.
- We ask team members to identify racial disparities in their programs and / or portfolios.
Contractors
Fiscal year endingGuideStar Pro Reports
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- Letter of Determination
- Officer and/or Employee data for 2022, 2021, 2020, 2019, 2018
- Contractor and/or Paid Preparer data for 2022, 2021, 2020
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