Epilepsy Association of Central Florida, Inc.

"Here to serve."

aka The Epilepsy Association   |   Orlando, FL   |  www.epilepsyassociation.com

Mission

The Epilepsy Association of Central Florida, Inc. (EACF) is dedicated to improving the quality of life of persons affected by epilepsy/seizure disorders.  EACF identifies, defines, and advocates the needs of persons with epilepsy, as well as planning and implementing strategies to meet those needs.

Ruling year info

1973

Executive Director

Mr. Charles "Chuck" Carmen

Main address

109 North Kirkman Road

Orlando, FL 32811 USA

Show more contact info

Formerly known as

Epilepsy Association of Central Florida

EIN

23-7247844

NTEE code info

Epilepsy (G54)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

One in 10 people will have a seizure in their lifetime with 1 in 25 developing epilepsy (recurring seizures). When someone has uncontrolled seizures they lose their ability to drive and many times lose their job. A person loses their medical insurance, financial difficulties are created, and they cannot get medical care. Depression is a comorbid state in persons with epilepsy and suicide is 33% greater than the general population. This is where the Epilepsy Association steps in. We are the only non-profit epilepsy program in our service area. These people have nowhere to go for their epilepsy medical care other than area emergency rooms. Through our program of individual/family case management and providing epilepsy medical care, we address these issues and more. We keep families together, keep clients in the workforce, control their seizures, improve their quality of life, and save our area hospitals millions of dollars annually.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Prevention and Education

Our Epilepsy Education and Prevention program conducts 100's of community presentations and offers materials for the general public, schools, medical community, children's groups, employers, high risk populations and many more. This award winning and CDC recognized program provides presentations and training about epilepsy, and shaken baby impact syndrome, to police, social service professionals, nurses, physicians, school teachers/students, etc..
 
The annual expenditure for this progam in 2018 was 229,000 dollars.  In 2019 we expect it to spend 200, 000 dollars.

Population(s) Served

Individual Case Managers are assigned to our clients and family to assist them in many ways, including: Emergency services for food, housing, etc.; family support; medical and diagnostic services and more (diagnostic testing, laboratory testing, medication assistance, neurology care, epilepsy clinics, etc.)
 
In 2018 our expenses for this program were 652,000 dollars and we anticipate 2019 to exceed 655,000 dollars.  Much more of the need is met through in-kind services from our community partners within the medical community.

Population(s) Served

Over 350,000 Floridians live with epilepsy and hundreds of thousands more are touched by it every day searching for answers to their questions, seeking information and education on our nation’s number one neurologic disorder, finding support, and looking for others just got easier. 
Reaching over 325,000 people each week, EpilepsyU.com developed by and maintained by the Epilepsy Association of Central Florida, is online resource that not only offers information and epilepsy education, but is a “Community” for contacts, socialization, support, webinars, online presentations, schedule of events, and much more for families and persons affected by epilepsy. EpilepsyU was uniquely designed and can be customized to meet personal needs.   Membership in the “U” not only has Members from around Florida but from many other states and internationally including the U.K and New Zealand.
The budget for this program is included in the Prevention and Education program.

Population(s) Served

Where we work

External assessments

Evaluated via the Impact Genome Project (2019)

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of clients served

This metric is no longer tracked.
Totals By Year
Related Program

Case Management and Medical Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of practicing medical doctors

This metric is no longer tracked.
Totals By Year
Related Program

Case Management and Medical Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Participating in our program by providing services to our clients either by volunteering or deeply discounting the fees we pay to them.

Number of briefings or presentations held

This metric is no longer tracked.
Totals By Year
Related Program

Prevention and Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Physical community presentations by our Prevention and Education Coordinator in our 4 county service area.

Total number of clients experiencing unemployment

This metric is no longer tracked.
Totals By Year
Related Program

Case Management and Medical Services

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

Client in our program that were unemployed at one time during the year.

Economic impact

This metric is no longer tracked.
Totals By Year
Related Program

Case Management and Medical Services

Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Context Notes

Using Florida's Agency of Heath Care Administrations own numbers for epilepsy emergency room services/admissions costs overlaid to our data for patient reduction of visits we reach this data.

Number of new clients within the past 12 months

This metric is no longer tracked.
Totals By Year
Related Program

Case Management and Medical Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

This is the number of new clients taken into the program during that year.

The number of initial neurologist visits provided.

This metric is no longer tracked.
Totals By Year
Related Program

Case Management and Medical Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

First time visit for a new client in the program with a neurologist.

Number of clinic visits provided

This metric is no longer tracked.
Totals By Year
Related Program

Case Management and Medical Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The number of follow-up neuology visits provided for existing clients in the program.

Number of epilepsy diagnostic tests provided (EEG and MRI).

This metric is no longer tracked.
Totals By Year
Related Program

Case Management and Medical Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

The number of EEG and MRI studies conducted. There was a grant for additional testing in 2017.

The number of laboratory tests provided.

This metric is no longer tracked.
Totals By Year
Related Program

Case Management and Medical Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Holding steady

Context Notes

The number of laboratory tests (blood tests) provided.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Give those economically disadvantaged and uninsured persons with epilepsy somewhere to come for medical care, education and support those reducing the economic impact on or community due to: school drop out, suicide, broken families, loss of employment and needless hospital/emergency room care. We also hope to prevent acquired forms of epilepsy through head injury prevention and education as well as break down the myths and stigmas surrounding epilepsy through our Education and Prevention programs.

Additionally our goal is to improve the quality of life for person affected by this disorder.

Our Case Management and Epilepsy Medical Program has been said by the CDC to be a model program for epilepsy care. Our data shows a 85% reduction in seizures in our clients in the first year and the same in emergency calls and hospital visits.

We use technology to reach millions worldwide each month through our online community and social media outlets for EpilepsyU.com providing current epilepsy news, research, webinars, epilepsy related courses and much more. Through this program we also bring much need awareness to this disorder affecting over 3.5 million Americans. 1 in 26 people will develop epilepsy during their lifetime so education and understanding is important for acceptance.

EACF has increased our in-kind medical partners in order to increase services at a nominal rate in the areas of neurologist clinics/appointments, diagnostics such as MRIs and EEGs. We won a grant to purchase our own EEG machine and use volunteer technicians to conduct them allowing us to do more and less costs. We have our own facility that was donated to us so we pay not rent allowing us to take funds that would go to that and spend it on client services.

We have also become a social enterprise, www.EpilepsyStore.com selling epilepsy awareness merchandise and assistive products nationwide to generate revenue still associated to our mission to help reduce our dependency of government contracts to deliver services and to keep up with the demand for them.

We have increased the number of services such as diagnostics, clinic and doctor visits, emergency medications supplied. We have increase in medical in-kind donations to help us continue to serve in an economical way. In 2015-2016 we took at $160,000 budget cut in our contract with the State of Florida Dept. of Health, but, we did not reduce services to anyone! Being economically sound we are able to weather the storm. We are working hard to replace these funds and we will succeed in doing so.

Financials

Epilepsy Association of Central Florida, Inc.
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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Epilepsy Association of Central Florida, Inc.

Board of directors
as of 05/01/2020
SOURCE: Self-reported by organization
Board co-chair

Mr. Bobby Isola

JLL

Term: 2020 - 2021


Board co-chair

Mr. Jeff Day

Marriott Vacation Club

Term: 2020 - 2021

Bill Denius

Kilgore, Pearlman, Attorney's at law

Colleen Salvage

Owner, Ad Design of Central Florida

George Nahas

Owner, George Nahas Chevrolet

Saundra Gray

Advocate/Mother

Kran Riley

Wayne Densch Charities

Evan Shear

Crossley-Shear Wealth Management

Willie May

Retired, State Attorney's Office

Ardit Bitincka

Rollins MBA Student Board Program

Aaron Thalwitzer

Zies Widerman & Malek Attorneys at Law

Jennifer Felder

Rollins College Crummer Graduate School

Ahmed Sadek

Neurological Services of Orlando, P.A.

Jeff Day

Community Volunteer

Bobby Isola

Cite Partners

Jeremy Waller

Goodwill Industries of Central Florida

Rebecca Devine

LivaNova, Neuromodulation

Dale Crossley

Crossley Shear Wealth Management

Diana Webster

BNY Mellon

Michael Brown

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • 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? No

Organizational demographics

SOURCE: Self-reported; last updated 8/15/2019

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.