Epilepsy Services Foundation

Where kids can be kids. Where families find support. Where hope endures.

aka Epilepsy Services Foundation   |   Tampa, FL   |  www.epilepsysf.org

Mission

Create a better future and environment for persons affected by epilepsy living in West Central Florida, primarily children, teens, young adults with epilepsy and their families.

Ruling year info

1977

Executive Director

Ms Kathie Michael

Main address

4628 N Armenia Ave

Tampa, FL 33613 USA

Show more contact info

EIN

59-1680892

NTEE code info

Health - General and Rehabilitative N.E.C. (E99)

Children's and Youth Services (P30)

Fund Raising and/or Fund Distribution (E12)

IRS filing requirement

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

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Many people have a difficulty understanding epilepsy: what it is, what causes it, how it is treated and how to administer first aid. It is important to create an awareness and understanding of epilepsy that is based on accurate information provided by years of research and new treatment options. The Epilepsy Services Foundation helps children, teens, young adults with epilepsy, their families, school nurses, students, community organizations and the community-at-large by providing epilepsy education and materials.

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?

Support Services Program

Provide funding for support services for persons affected by epilepsy such as emergency epilepsy medications, epilepsy medical devices.

Population(s) Served
Children and youth
Young adults

Co-founded by the late Paul Newman and General Norman Schwarzkopf, Camp Boggy Creek provides kids with epilepsy and other chronic medical conditions the opportunity to be kids for a week.  The camp is a medically-supervised camp with doctors, nurses and counselors present to meet the medical and social needs of the kids.  The Epilepsy Services Foundation selected Camp Boggy Creek as the place to send its kids because kids with a chronic medical condition normally cannot participate in a camp that has a variety of interactive activities.  At Camp Boggy Creek,the Foundation knows its kids are medically supervised and participate in recreational activities with other kids facing the same condition.

Population(s) Served
Children and youth

The scholarships are set up to help fund the educational pursuits of college students affected by epilepsy and healthcare professionals pursuing the field of neurology.

Population(s) Served
Adults
Young adults

Developed by the Epilepsy Foundation, ESF provides an innovative approach to epilepsy education for persons with epilepsy, families and volunteers to increase their knowledge and understanding of epilepsy.

Population(s) Served
Adults

The “Meet and Greet” Program is designed for families:
• for parents of children/teens/young adults with epilepsy to meet and talk to other parents of children/teens/young adults with epilepsy
• for children/teens with epilepsy to meet and talk with other children/teens with epilepsy
• for young adults with epilepsy to meet, socialize and talk with other young adults with epilepsy

Population(s) Served
Families
Young adults

This program enables volunteers to meet with and support families of children newly diagnosed with epilepsy or returning families who have had no previous contact with the volunteers. The volunteers must have epilepsy or be a family member of a child with epilepsy. Volunteers are called by a nurse patient navigator at St. Joseph Children's Hospital and asked to meet with families who have requested support services.

Population(s) Served
Families
Adults

The Epilepsy Services Foundation provides two weekends for families to get together to meet each other, support each other, and have needed respite time. The weekends are held in the spring and fall each year.

Population(s) Served
Families

Where we work

Awards

Certificate of Appreciation 2018

Hillsborough County Schools

Top Rated Health NonProfit 2018

Great Nonprofits

Top Rated Health NonProfit 2017

Great Nonprofits

Certificate of Appreciation 2012

Pinellas County Schools

Schwarzkopf Society Award 2017

Camp Boggy Creek

Schwarzkopf Society Award 2018

Camp Boggy Creek

Certificate of Appreciation 2018

Hillsborough County Schools

Affiliations & memberships

Great Nonprofits Organization 2018

Our results

SOURCE: Self-reported by organization

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

Total number of volunteer hours contributed to the organization

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth, Young adults

Related Program

Support Services Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Voluteer hour performed by board and community volunteers.

Number of external speaking requests for members of the organization

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth, Young adults

Related Program

Support Services Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

2020 speaker requests lower due to Covid 19.

Total dollars received in contributions

This metric is no longer tracked.
Totals By Year
Population(s) Served

Children and youth, Young adults

Related Program

Support Services Program

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

2020 contributions decreased due to Covid 19.

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

ESF has four main goals:

* Maintain and enhance a strong, enduring, responsive, financially stable, accountable and caring organization.
* Develop and implement family programs.
* Provide epilepsy education and awareness programs.
* Expand and enhance community outreach and partnerships, awareness and understanding about epilepsy.

Goal 1:
1. Endowment
• Enhance marketing efforts regarding donation options: emphasize naming ESF as a recipient in a Life Insurance policy (10,20 or a higher %) or charitable gifts of appreciated securities (donation of actual stock shares).
2. Grants
• Increase grant funding by 10%/year
3. Special Awareness/Charity Events
• Utilize current events to increase levels of fundraising by 20% over 3 year: Walk For Epilepsy, Golf for Kids Classic, ESF SeptemBEERfest
• Utilize AmazonSmile, Facebook and Go Fund Me as charity/fundraising initiatives.
4. Direct Mail: grow response to annual appeal at Thanksgiving
5. Major/Matching Gifts
• Develop a major gifts program
• Enlist Board to identify one major gift donor to make a donation to ESF
• Enlist Board to identify employers that give matching gifts.
• Market the use of matching gifts from employers or by a donor(s) giving their gift as a match to offer an incentive to other prospective donors to give.

Goal 2:
1. Increase participation in the “Meet & Greet" program for parents, children, teens and young adults and their families.
2. Increase participation in the Grace's Hope Hospital Visitation Program and the HOPE Mentoring Program.
3. Increase participation in epilepsy camp and epilepsy family retreat weekends.

Goal 3:
1. Provide Epilepsy Mentor training program twice/year.
2. Provide medical education programs utilizing neurologists and epileptologists.
3. Provide community epilepsy education programs in schools, school nurses and bus drivers.
4. Provide epilepsy programs to day care personnel.

Goal 4:
1. Engage the board, volunteers and persons affected by epilepsy in community educational events, partnering opportunities and awareness events.
2. Create greater community awareness for persons affected by epilepsy through educational and support group programs, social media, public service messages and fundraising programs. Utilize the services of teen and young adult individuals who are adept at using social media and know what young people want to see and read: shorter articles, videos and persons of interest.
3. Engage epileptologists and neurologists to help ESF make available information and resources for families.
4. Continue to expand school and day care educational programs.
5. Create an “Ask the Neurologist" section in ESF website or on Facebook to address Questions and Information Issues.

Goal 1.
ESF can meet these goals due to an active group of 150+ volunteers who support staff in developing and implementing the goals. Together with the staff, the volunteers assist in developing the steps ESF must take to insure the Foundation remains a viable force within the community. The volunteers look at exploring and developing additional donation options, creating new awareness events and seeking additional grants and opportunities to solicit major gifts.

Goal 2.
There are approximately 16,000 children, teens and young adults with epilepsy living in ESF's service area. We are utilizing volunteers to visit families of children newly diagnosed with epilepsy while in the hospital. We utilize social media to expand participation in the epilepsy camp program and the family retreat program.

Goal 3.
To meet the needs of these individuals we have more volunteers to help ESF expand our training programs so more families can assist us with our community awareness, mentoring and educational programs.

Goal 4.
Together with volunteers, ESF is expanding its social media program to market our services via Facebook, Twitter and Instagram to reach out to more of the 16,000 individuals and their families living in our service area. We have updated our website which has increased the number of persons seeking information about ESF and its services from less than 100/month to 500/month. We have asked neurologists to write articles or submit articles of interest that we can share with families on our social media sites.

Goal 1:
* ESF has one new securities donation and one life insurance policy that lists ESF as a 10% beneficiary. We need more and will enlist the help of the National Association of Insurance and Financial Planners-Tampa during the coming year.
* ESF wrote several recurring grants and 4 additional grants during the past year. ESF received the recurring grants and all 4 additional grants.
* ESF increased it awareness events funding from $25,000 to almost $60,000.
* ESF has not accomplished to date a major gifts program or donor.

Goal 2:
* The Meet & Greet Support Groups are increasing as more families the ESF service programs like the Family Retreat Weekends. We have more families participating because we center the support groups around social settings that enable the families to have fun while talking about the impact of epilepsy on their children and their families. The greatest results are seen in the Young Adults groups who has seen an increase from 3 persons coming together to 15+ during the year.
* The Hospital Visitation has 4 active volunteers who go to St. Joseph's Hospital when contacted by the nurse coordinator.
*

Goal 3.
* This year we had 12 participants in the HOPE Mentoring Program. These individuals helped us to give presentations to schools, school nurses, bus drivers, community groups and the hospital visitation program.. This is one area that has become a positive force for educating more people in the community.
* We highlighted the positive impact of other programs in goal 2.

Goal 4:
* The social media program is a new work in progress. We now have an adult, a teen and a young adult who have agreed to enhance ESF's social media sites. The teen and young adult will be offering weekly articles geared toward teens and young adult. They created hashtags and postings to reach more people than 2,000 regulars during the past year, an increase of a thousand persons. Their goal is to reach thousands more.

Financials

Epilepsy Services Foundation
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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

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Epilepsy Services Foundation

Board of directors
as of 8/19/2021
SOURCE: Self-reported by organization
Board co-chair

Mr. Gary Englund

Morgan Stanley

Term: 2015 - 2021


Board co-chair

Mr. Scott Strain

E*Trade

Term: 2014 - 2020

Scott Barry

Bay City Rehab & Wellness

Amanda Stephens

Wiand Guerra King PA

Dina Vila

Haasch Law Group

Sande Vanhook

Volunteer

Rachelle Rossmeisl

Synuity PEO

Marcelo Miano

E*Trade

Robin Abbruzzese

Greenwich Biosciences

Cal Albritton

Federal Prosecutors Office

Karen Boggess

Juvenile Welfare Board

Monique Scott

State Attorney's Office

Dina Vila

Fran Haasch Law Group

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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 05/27/2020

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
Female
Sexual orientation
Decline to state
Disability status
Decline to state

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

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

Equity strategies

Last updated: 05/27/2020

GuideStar 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

Data
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.