Epilepsy Services of SW Florida
1750 17th Street Bldg. I-2
Sarasota FL 34234
Mission
To assist all uninsured adults diagnosed with epilepsy in the agency's eight county region to obtain medical, case management and prevention and education services so that they may overcome the problems associated with the disorder and to assist them in achieving independence, self-sufficiency and their maximum potential. 
Leadership
CEO/Executive Director Mr. Kevin Lindberg
Board Chair Mr. Matt Sandburg Esq.
Board Chair Affiliation Attorney
General Info
Former Names
Epilepsy Foundation of Southwest Florida, Inc.
Tax Exempt Status Public Supported Charity
Incorporation Year 1995
State Charitable Solicitations Permit Yes Mar 2018
State Registration Yes Mar 2018
Financial Summary
 
 
Projected Revenue $476,205.00
Projected Expenses $459,305.00
IRS Letter of Determination
Tax Exempt Status IRS LetterView
Impact Statement
Top five accomplishments:
 
1. Serving over 560 patients in the agency's eight county region;
2. Exceeded Florida Department of Health requirements for client intake, community outreach, prevention and education activities.
3. Refurnished reception area and offices at Sarasota headquarters utilizing funds from a Selby Foundation grant. 
 
Top five goals:
 
1.  Continue to implement strategic plan which identifies areas targeted for improvements and assigns staffing and deadlines for appropriate action steps.
2.  Seek additional sources of funding  and resources beyond Florida Department of Health funding in order to meet the needs of additional uninsured epilepsy patients.
3. Provide treatment to the greatest number of eligible clients possible in order to gain and maintain their seizure control and to gain the greatest degree possible of personal dignity and independence.
4 . Continue focus on volunteer board development
5.  Increase program awareness in Lee and Collier counties.
Needs Statement
Top five pressing needs:
 
1. Additional funding to pay for critical medical testing and services for uninsured adults with epilepsy and to hire additional staff to handle increased caseload.  $25k and up
2. Funding to hire regional development staff in order to identify and solicit funding resources  in our eight county service area.  $60k
3. Two to three additional volunteer board members.
4. Office upgrades in Lee and Collier counties. $10k
5. Resources to improve our public communications and branding. $10k
Background Statement
  Epilepsy Services of Southwest Florida is a not-for-profit organization providing (i) medical, (ii) case management and (iii) prevention and education services to uninsured individuals who have epilepsy in an eight county area on the west coast of Florida. 
  We are dedicated to the prevention and control of epilepsy and its consequences and to assisting people with epilepsy, as well as their families and other concerned individuals in overcoming the problems associated with the disorder.  We help our patients work towards independence and self-sufficiency so that they may achieve their maximum potential.
    In the past 4 years we have served approximately 600 patients annually.  We help our clients control their seizures by creating and regularly monitoring an individualized plan of care for each patient.  With the help of local neurologists and other medical providers we hold regular clinics providing treatment and follow up.  Each patient receives medical testing and care appropriate to their condition.  These services have been shown to drastically improve their quality of life.
  We are able to provide these services because they are donated or provided at deeply discounted rates.   Similar discounts prevail for other services such as lab tests, MRI's and EEG's.  Most of our clients receive these services at no cost to them.  By controlling the seizures of our clients we reduce the number of individuals who go to the emergency room for treatment which has a much higher cost per patient than our services.
 Additionally each patient is assigned a case manager who assists them with medical or other social problems they may encounter as a result of epilepsy such as transportation, housing, employment, substance abuse and other issues. 
  In the future we strive to continue to expand our services and increase the number of patients we treat.
Areas Served
Areas Served
Area
FL- Charlotte
FL- DeSoto
FL- Lee
FL- Manatee
FL- Sarasota
Areas Served Comments Our agency serves the following counties:  Manatee, Sarasota, Charlotte, DeSoto, Lee, Hendry, Glades and Collier.
Service Categories
Primary Org Type Human Services
Secondary Org Type
Tertiary Org Type
Statement from the Board Chair/Board President
Statement from the CEO/Executive Director
   The goal of the Epilepsy Services of Southwest Florida is to assist in the process of empowering our patients toward self -management in order to be able to lead as close to a normal life as possible. With appropriate and effective diagnosis and treatment we regularly experience this outcome.   
   According to a recent report from the Institute of Medicine (IOM), epilepsy is the nation’s fourth most common neurological disorder after migraine, stroke and Alzheimer’s disease.  Epilepsy is a complex spectrum of disorders that affects millions of people in a variety of ways and is characterized by unpredictable seizures that differ in type, cause and severity.  Living with epilepsy is much more than just seizures. The disorder is often defined in practical terms such as challenges in school, uncertainties about social situations and employment, limitations on driving and questions about independent living.
    Preventing epilepsy is possible for some causes of the disorder. The IOM report states that progress has been made in developing new seizure medications and refining medical devices and surgical techniques to reduce or eliminate seizures for many individuals with epilepsy. However, referrals to specialized care are often delayed, and access to these treatments fall short, particularly for underserved populations.
   Epilepsy Services can provide these at-risk patients with medical, prescription and case management services at little to no cost. We are able to pay for these costs because we contract with local neurologists and other medical service providers to obtain the services at greatly reduced prices.  Our doctors donate or substantially discount their services as do laboratories, medical suppliers and pharmaceutical companies.Our program has helped people with epilepsy deal with these issues for over 45 years. We provide critical medical attention including access to consultation with neurologists, diagnostic testing and assistance accessing medications to low income and uninsured individuals. Additionally, we offer case management, referrals to other community services and prevention and educational programs to the community at large.
   There are more people who could use our services if we could generate the additional resources needed to provide them.   This is our focus moving forward.
Programs
Description The Direct Client Services Program centers on medical treatment for the patient and helping the patient overcome the problems associated with epilepsy.  When a patient is referred to us a case manager will conduct an intake interview to gather the patient's medical history and schedule an initial exam with a neurologist.  The case manager will educate the patient about epilepsy, ways to manage seizures and epilepsy first aid.  Generally the doctor will order certain tests such as an MRI, EEG and/or blood work and an individualized plan of care is prepared for the patient based on the test results.  The patient will then attend clinics, have follow up appointments and further testing, as necessary.  Meanwhile, the case manager may assist the patient with enrolling in Florida's Patient Assistance Program (which may allow them access to free or low cost medications) or work with other agencies to assist with other social or medical issues.
Budget $335,000
Category Human Services, General/Other
Program Linked to Organizational Strategy Yes
Population Served People/Families of People with Health Conditions US Adults
Short Term Success
95% of our patients reported no seizures requiring an emergency room visit.  90% of our patients reported that they feel better about themselves as a result of the Agency's services. 
85% of our patients report that they are more independent in taking care of their needs.  
What we do works!
Long Term Success
We currently treat approximately 600 patients annually.  While we are handling current demand for services we do not have the financial resources necessary for growth.    Also, given population figures, epilepsy incidence rates in adults and the number of people without access to adequate health care, it is clear the number of people who could benefit from our programs is much higher.
  As evidence by client surveys we provide patients involve drastically positive changes in their lives.  A high percentage of those who access our services can maintain a level of control over their seizures and increase the prospect for leading normal lives.  Long term it would be desirable to create a level of awareness and financial stability so that all who could benefit from this program could have access to it.
Program Success Monitoring We keep track of our results by having the patients complete written surveys at their doctor and clinic appointments (at least once a year). 
Program Success Examples Many times the patients treated by our agency can achieve independence and self-sufficiency previously unobtainable when not receiving medical treatment for the disorder.  With treatment some patients can eliminate their seizures and obtain a driver's license, hold a job and accomplish many other daily tasks other people take for granted.  By helping patients reduce or control their seizures, the Agency's services help many patients be more personally safe and comfortable in public situations.
Description
   The prevention and education programs center on education of patients, their families, friends, employers, co-workers and the general public on epilepsy, seizure prevention and epilepsy first aid.  The program encompasses many different forms of prevention and education activities from one-on-one meetings regarding the disorder and ways to prevent seizures to first aid and seizure recognition training sessions to bike helmet fitting events.
   A stigma is often associated with the disorder.  Many times in public settings a seizure may be mistaken for mental illness or a drug-related incident.  This leads many patients to feel uncomfortable and awkward in public and/or social settings and to be treated unfairly.  Education of police, fire safety, first responders, nurses and other officials and the general public can not only save lives but can go a long way to creating a positive outcome and interaction where lack of knowledge and fear may previously have prevailed.
Budget $135,000
Category Human Services, General/Other
Program Linked to Organizational Strategy Yes
Population Served People/Families of People with Health Conditions Unemployed, Underemployed, Dislocated Adults
Short Term Success The success of this program is less tangible than with our Direct Client Service Program, however, its importance is no less significant. One hundred percent of those being educated should know what to do when someone is having a seizure and should know the characteristics of the disorder.  The success for this program is linked to how many people are reached by it and provided education.
Long Term Success Ultimately we want 100% of our patients and their friends, family and co-workers to understand the disorder and know epilepsy first aid.  We would like to provide training for all local emergency workers and officials as well as nurses on the disorder, seizure recognition and prevention and epilepsy first aid.
Program Success Monitoring The success of this program is measured by surveys.  Surveys are distributed to all people attending one-on-one or small group seminars.With large group programs or awareness activities where surveys are impractical, we measure success by the number of people spoken with, attending, or receiving materials.
Program Success Examples When patients and/or their families come to us for counseling after receiving their first diagnosis of Epilepsy, they generally don't know much about the disorder.  Many times they are scared or confused and have a hard time even understanding the medical terminology being given to them.  For these people, gaining a basic understanding of the disorder and knowing how to perform first aid in the event of a seizure is extremely helpful and comforting.  With help from the neurologists, many times they can learn how to control or manage their seizures.  They can learn triggering factors and how to avoid certain situations which may cause them harm.  This program also gives them a vehicle to educate those around them about the disorder.  Friends and family may frequently find themselves needing to give first aid or communicate an issue regarding the disorder to an official or someone in the public.  Education works for our patients and we are committed to providing it.
Comments
Program Comments by Organization
   
   Epilepsy is a complex spectrum of disorders that affects millions of people in a variety of ways and is characterized by unpredictable seizures that differ in type, cause and severity.  Living with epilepsy is much more than just seizures. The disorder is often defined in practical terms such as challenges in school, uncertainties about social situations and employment, limitations on driving and questions about independent living.Our program has helped people with epilepsy deal with these issues for 45 years. We provide critical medical attention to uninsured individuals. Additionally, we offer case management, referrals to other community services and prevention and educational programs to the community at large. Our current case load of patients is approximately 600.  A quick look at the statistics available show that there is room to help many others. In a 2012 Institute of Medicine report it is estimated that 2.2 million people out of the US population of 313 million have epilepsy and approximately 150,000 new cases are diagnosed each year.    
      Our service area including Sarasota, Manatee, Charlotte, Lee, De Soto, Hendry, Glades and Collier has a population of 1,031,206 people between the ages of 18 and 65 according to the most recent Census Bureau Report.   Using the above US incidence rate of .7 percent it would follow that there would be more than 7200 people with epilepsy in our service area.  Our program focuses on the uninsured.  The census bureau’s Economics and Statistics Administration estimated that 15.7 percent of the US population was uninsured.  Using that figure you could estimate that in our service area there are approximately 1130 people who would qualify for our program – more than double the number we now serve. 
   In order for us to be able to address the segment of our population who would use our programs and services if they could, it will be necessary to significantly raise awareness and to raise additional funding to cover the cost of providing the services described above.   
 
CEO/Executive Director
CEO/Executive Director Mr. Kevin Lindberg
CEO Term Start July 2013
CEO/Executive Director Email klindberg@esswfl.org
Experience
Mr. Lindberg has more than 35 years of not-for-profit management and leadership experience including executive director roles with The Wellness Community Southwest Florida and The Southwest Florida Chapter of the American Red Cross.  Throughout his time with these organizations Mr. Lindberg has specialized in strategic planning and board development as well as fund development.  He has led renovation and  capital campaigns and managed diverse revenue sources from direct mail, grants, planned giving amd public funding to special events.
Former CEOs/Executive Directors
NameTerm
Ms. Alison Haskins Jan 2012 - Mar 2013
Manya Paru Apr 2013 - June 2013
Senior Staff
NameTitle
Staff & Volunteer Statistics
Full Time Staff 5
Part Time Staff 3
Staff Retention Rate % 100
Professional Development Yes
Contractors 0
Volunteers 15
Management Reports to Board Yes
CEO/Executive Director Formal Evaluation Yes
Senior Management Formal Evaluation Yes
Non-Management Formal Evaluation Yes
Collaborations
Our agency is a partner agency with United Way. We are a member of the Florida Epilepsy Alliance, Inc. which is a non-profit organization composed of state-wide epilepsy service providers. We also collaborate with the Florida Department of Health.
Affiliations
AffiliationYear
United Way Member Agency
External Assessments and Accreditations
Assessment/AccreditationYear
Florida Department of Health
Risk Management Provisions
Professional Liability
Commercial General Liability
Government Licenses
Organization Licensed by the Government No
Plans
Fundraising Plan Yes
Communication Plan No
Strategic Plan No
Strategic Plan Years 2
Strategic Plan Adopted June 2014
Management Succession Plan No
Continuity of Operations Plan No
Policies
Nondiscrimination Policy Yes
Whistle Blower Policy No
Document Destruction Policy Yes
Directors and Officers Insurance Policy No
Policies and Procedures Yes
Comments
Management Comments by Organization
Epilepsy Services of Southwest Florida welcomes the challenge of enhancing our ability to meet the needs of the increasing number of people facing epilepsy.  To address emerging needs, we intend to  engage in more fundraising in order to secure unrestricted dollars, allowing us to address unmet needs.  The unmet needs can range from having transportation funds available for our patients to get to medical appointments, to securing the participation of additional neurologists to treat our patients, to securing simple resources for staff to carry out their duties in a more effective and efficient manner.  We recognize the importance of carrying out a fund development plan.  
  
  
Board Chair
Board Chair Mr. Matt Sandburg Esq.
Company Affiliation Attorney
Board Term July 2017 to June 2019
Board Chair Email matt@sandburglaw.com
Board Members
Board Members
NameAffiliation
Mr. Jay Abrams Insurance Agent
Ms. Julie Aranibar Community Volunteer
Dr. Lane Carlin M.D.Neurologist, Florida Neurology Group, P.A.
Mr. Art Jackman Esq.State Attorney's Office - Felony Supervisor
Mrs. Jane Kelly Community Volunteer
Ms. Marilyn Kirchman RNSarasota Memorial Hospital
Mr. Matthew Sandburg Esq.Private Practice Attorney, Law Office of Matt Sandburg, P.A.
Ms. Cynthia Smith Smith Wealth Management
Ms. Maria Vasconsuelos RNMedSol
Mrs. Margaret Yurewitch Newsbank
Constituency Includes Client Representation No
Board Ethnicity
African American/Black 0
Asian American/Pacific Islander 0
Caucasian 10
Hispanic/Latino 0
Native American/American Indian 0
Other 0 0
Board Gender
Male 4
Female 6
Unspecified 0
Governance
Board Term Lengths 3
Board Term Limits 99
Board Orientation Yes
Number of Full Board Meetings Annually 4
Board Meeting Attendance % 48
Board Self-Evaluation No
Written Board Selection Criteria Yes
Board Conflict of Interest Policy Yes
% of Board Making Monetary Contributions 80
% of Board Making In-Kind Contributions 50
Standing Committees
Executive
Finance
Comments
Governance Comments by Organization
We continue to work to strengthen our organizational governance policies.  We continue to seek additional appropriate board members who can not only help us reach our goal of 100 percent board giving, but to help assure that we can provide our programs and services to all who are eligible and wish to take part. 
Fiscal Year Projections
Fiscal Year Begins 2017
Fiscal Year Ends 2018
Projected Revenue $476,205.00
Projected Expenses $459,305.00
Total Projected Revenue includes "in-kind" contributions/ donations No
Organization has Endowment No
Capital Campaign
Currently In a Capital Campaign No
Anticipate Campaign within 5 years? No
Campaign Purpose
Campaign Goal
Campaign Dates 0 to 0
Amount Raised To Date 0 as of 0
IRS Form 990s
Form 9902016
2015 9902015
Form 9902014
9902013
9902012
9902011
9902010
9902009
Form 9902008
Audit/Financial Documents
Audit2016
Audit2015
Audit2014
Audit2013
Historical Financial Review
Revenue SourcesHelpThe financial analysis involves a comparison of the IRS Form 990 and the audit report (when available) and revenue sources may not sum to total based on reconciliation differences. Revenue from foundations and corporations may include individual contributions when not itemized separately.
Fiscal Year201620152014
Foundation and
Corporation Contributions
$0$0$0
Government Contributions$339,349$474,342$377,354
Federal$0$0$0
State$339,349$474,342$377,354
Local$0$0$0
Unspecified$0$0$0
Individual Contributions$89,922$41,822$35,752
$0$27,509$38,720
$0$0($408)
Investment Income, Net of Losses$62$3,056($15,302)
Membership Dues$0$0$0
Special Events$0$0$0
Revenue In-Kind$14,465$0$0
Other$6,142$3,449$7,764
Expense Allocation
Fiscal Year201620152014
Program Expense$368,707$421,215$403,045
Administration Expense$67,105$72,591$91,084
Fundraising Expense$25,454$27,864$27,100
Payments to Affiliates$0$0$0
Total Revenue/Total Expenses0.941.050.85
Program Expense/Total Expenses80%81%77%
Fundraising Expense/Contributed Revenue6%5%6%
Assets and Liabilities
Fiscal Year201620152014
Total Assets$246,143$273,393$240,497
Current Assets$232,722$251,340$215,218
Long-Term Liabilities$0$0$0
Current Liabilities$34,896$36,160$32,741
Total Net Assets$211,247$237,233$207,756
Top Funding Sources
Fiscal Year201620152014
Top Funding Source & Dollar AmountGovernment Grants - State $339,349Government Grants - State $474,342Government Grants - State $377,354
Second Highest Funding Source & Dollar AmountContributions, gifts, grants $89,922Contributions, gifts, grants $41,822Federated Campaigns $38,720
Third Highest Funding Source & Dollar AmountOther $6,142United Way $27,509Contributions, gifts, grants $35,752
CEO/Executive Director Compensation $50,001 - $75,000
Tax Credits No
Solvency
Short Term Solvency
Fiscal Year201620152014
Current Ratio: Current Assets/Current Liabilities6.676.956.57
Long Term Solvency
Fiscal Year201620152014
Long-Term Liabilities/Total Assets0%0%0%
Financials Comments
Financial Comments by Foundation Financial information taken from IRS Form 990 and audit documents.  Individual contributions include foundation and corporate support.  Federal return for 2011 reconciles with audited financial statement; however, for tax years 2009 and 2010 the nonprofit filed Form 990-EZ which does not include a reconciliation between the corporate books and tax return. 
Nonprofit Epilepsy Services of SW Florida
Address 1750 17th Street Bldg. I-2
Sarasota, FL
Phone 941 953-5988 303

THE COMMUNITY FOUNDATION OF SARASOTA COUNTY, INC. IS A REGISTERED 501(C)(3) NON-PROFIT CORPORATION. A COPY OF THE OFFICIAL REGISTRATION AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE WITHIN THE STATE (1-800-HELP-FLA) OR FROM THE WEBSITE: WWW.FRESHFROMFLORIDA.COM. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL, OR RECOMMENDATION BY THE STATE. ONE HUNDRED PERCENT (100%) OF EACH CONTRIBUTION IS RECEIVED BY THE COMMUNITY FOUNDATION OF SARASOTA COUNTY. REGISTRATION #SC-02471.