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Epilepsy Services Foundation, Inc.

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Nonprofit Overview

Causes: Epilepsy, Health, Health Care, Public Health

Mission: The Epilepsy Services Foundation, Inc. is committed to creating a better future and environment for persons affected by epilepsy in West Central Florida, including children, teens, young adults and their families. The office is located in Tampa, FL.

Results: ESF trained over 70 volunteers to be mentors who can provide education and support to other parents and families affected by epilepsy. ESF provided 25 camp scholarships for children and teens to participate in a medically-supervised camp, Camp Boggy Creek. ESF provided 15 scholarships for families to attend one of two Epilepsy Family Retreat Weekends. ESF provided 2 scholarships for University of South Florida medical students and residents and 2 scholarships for nurses and healthcare professionals to continue their pursuit of neurology as a medical focus. ESF provided 4 scholarships for persons affected by epilepsy to pursue their college degrees. ESF provided numerous epilepsy education programs to students, teachers, childcare workers and nurses in West Central Florida.

Target demographics: Persons affected by epilepsy, primarily children, teens, young adults & their families

Direct beneficiaries per year: 800-1,000 persons

Geographic areas served: West Central Florida: Hillsborough, Polk, Hardee, Highlands, Pinellas, Pasco, Hernando counties.

Programs: Information and Referral Education & Awareness Graces' Hope Hospital Visitation Program Support Groups Mentoring Project Access Emergency medications Fundraising Volunteer

Community Stories

117 Stories from Volunteers, Donors & Supporters

1

Volunteer

Rating: 5

I have been a volunteer at ESF for almost 20 years. During that time I have watched many families receive education, college scholarships, family camping weekends and Boggy Creek camper weeks, and many other benefits. The education is not only for dealing with seizures but also dealing with schools and stigmas. I have seen tragedies happen in families and the ESF community has rallied around those families. And I have seen miracles happen when the right physician and treatments have changed lives. Thank you for all the volunteers and members of ESF! Yes, I am proud to be part of the team!

Previous Stories
2

Volunteer

Rating: 5

I have been involved with ESF since early 2000; as a volunteer, as a part-time employee, and as a donor. Wishing that eveyone could see the good works that have been done and are still being done by ESF. The children that have been able to attend camp, the college students that have been given scholarship funds, the medical expenses that have been paid, the social activities for clients at holidays, and the education that has been given to the community. What an amazing organization!

Client Served

Rating: 5

This organization has helped our family in so many ways and we are so Thankful to have them.

About three and half years ago when our daughter Bailey was 4 she experienced her first seizure out of no where. It was late my husband was deployed and my oldest daughter Rhy was upstairs preparing for bed. Bailey fell asleep on the couch but woke up getting sick about 30 minutes after she fell asleep. I thought it was a stomach virus and was walking her to bathroom only to find I couldn’t understand her and her eyes shot to the side and she dropped. I grabbed her and she just started seizing. Making weird breathing sounds. This was a moment I will never be able to forget. It was terrifying. I was on the phone with 911 they sent a ambulance. In the mean time I was trying to find someone to take my oldest Rhylee because they wouldn’t let her on the ambulance. Had to call my husband and let him know aswell. We were rushed to St. Joseph’s Children’s running hot because they were having a hard time getting her out of the seizure. They said it lasted 20 minutes and after all the testing/ being admitted she was diagnosed with Tonic Clonic seizures and Panayiotopoulos syndrome. We were lost. This cake out of no where. Epilesy Services Foundation stepped up to the plate and helped us with resources and understanding all the testing, medicine options and connecting us with families like ours. They helped us not fee alone. We have enjoyed info sessions, family days out and the yearly walk. In May of 2018 Bailey ended up having a focal seizure at school and so once again we were confused on where this came from. Epilesy Services Foundation stepped up to the plate and served our family greatly. This organization is instrumental in the community. We love them and would be where we are today in this crazy journey with out them.

Volunteer

Rating: 5

Great organization that puts FAMILIES FIRST. We have been involved with ESF for almos 2 years and have met some amazing people and have made life long friends that we can always rely on for support with needed. ESF and Tom Orth's knowledge and support of those living with epilepsy is above and beyond. The different Events that We had went had been Super Nice and had Enjoy all of them.Thank you for all you have done for our family and all you continue to do for others and the community. GOD BLESS !!!!

Client Served

Rating: 5

Our journey started on November 15, 2018 when our then 4 1/2 year old son was diagnosed with epilepsy. His preschool had to call 911. This day was terrifying and we had no idea what we were about to embark on. I remember leaving the doctor's office trembling, scared, and lost. I am a social worker so I knew there had to be an agency that could help us. I found ESF and they have helped support us since the day we contacted them. It means everything to us to know other families who are experiencing what we are and an agency that helps connect us together. ESF also provides information, support, advocacy and knowledge. We have participated in events and the awareness walk. This agency is critical for families. This I can not say that enough. We so appreciate all they have done and what we can do in the future to give back. Continued awareness, advocacy, and services are needed for families who have a child diagnosed with epilepsy. Thank you to all at ESF!

Volunteer

Rating: 5

After my son was diagnosed with Epilepsy when he was just 6 months old, I was searching for a local organization that supported parents and children who live with Epilepsy. That’s when I found ESF! Since then I have found a community of parents and kids who have been through similar experiences as my family has. It was definitely a relief to know if I needed an ear or support in anyway I knew where to turn. Now I volunteer with them for the annual epilepsy walk each year.

Board Member

Rating: 5

My journey with ESF started at one of the most challenging times in my life. In 2006 I was twenty-two years of age, I had my whole life mapped out for success, and had been sworn in as an officer with the Tampa Police Department. Then one day the physician who determined our medical clearance for the pension determined he could not clear me medically for duty. The reason; because I am epileptic. Soon after the Tampa Police Department fired me due to my epilepsy. Today this would have never have happened, accommodations would have been made according to the requirements of the American Disabilities Act, but back then there was little protection and or support for those facing employment discrimination due to epilepsy. The range of emotions I suffered ranged from anguish, shame, despair, loneliness and hopelessness. Despite having been living with epilepsy since the age of ten, I often kept it a secret from even those closest to me, I pretended I was “normal” and unaffected by the repercussions of the consequences of being epileptic. This of course was a lie, I had always suffered from a lack of confidence, feelings of inadequacy, and just always feeling different. This unplanned life changing event brought me face to face with my deepest fear. Epilepsy. One of the side effects of growing up epileptic and feeling the way described above is that you grow to become resilient and you learn to preserve. Thus, it did not take me long to decide I needed to embrace this thing I so adamantly avoided my entire youth and learn to not just live with epilepsy but lead with epilepsy. It was then that I discovered ESF and met Tom Orth. I immediately jumped into volunteering, fundraising, and exploring for opportunities to spread awareness and educate. Every step of the way ESF and Tom were there to support, encourage, and educate me on how best to advocate for those with epilepsy and their family members. I eventually became a teacher and used my platform as an educator to provide Tom and other members of ESF an opportunity to enter into the classrooms and educate students and teachers. In addition, although I knew my profession as a law enforcement officer had ended, I found a way to practice in the field of law enforcement helping and fighting for others who like me had been discriminated against. I started law school at Stetson College of Law and attended the Part-Time Program while teaching full time. This, again, afforded another opportunity for me to advocate and educate as a law student and once again Tom was there with all of ESF’s resources to help me in my endeavors. While attending law school ESF supported me as well by awarding me the 2010 and 2011 Richard Gunderman Beacon of Hope Scholarship. This award was an honor and helped me financial with my student loans. In 2013 I graduated from law school and was hired at the State Attorney’s Office as an Assistant State Attorney. Today, thirteen years after meeting Tom and becoming involved with ESF I continue to volunteer, educate, and advocate as a newly appointed Board Member. Because of ESF I have been able to rise above my disability and have discovered abilities I never knew I could possess. Prior to ESF I cowered at the idea of speaking publicly about my condition. Today I openly and perhaps most importantly proudly discuss the difficulties and adversities I have had to overcome.

Previous Stories
1

Volunteer

Rating: 5

My story starts when I was diagnosed with Juvenile Myoclonic Epilepsy at the age of eight. Luckily for me my condition was so minor that even my closest friends were not aware that I had epilepsy; epilepsy in a way became my dark secret in life. I led a very normal active life. I began my college career with the intention of becoming a lawyer, but subsequently determined that my passion at that time lied in a career in law enforcement. I applied for a very competitive scholarship with the Tampa Police Department. After a year-long background screening process that involved numerous psychological, fitness, and academic testing I eagerly accepted TPD’s scholarship offer. I had graduated from the police academy third in my class academically. A week after getting sworn in, I received a phone call from the doctor informing me that he would not be able to approve me medically fit to receive the pension. Consequently I lost my job. My worst nightmare had come true in the worst possible way. The doctor said that my condition was a “disability” and the department said that they would not be able to make any accommodations for me. I had never been called disabled before or treated in such a way, and now I was losing my job over my so called “disability”. Looking back I now realize that this was a turning point in my life. Before, I never considered myself an epileptic, but I was now forced to realize that I was. I was angry and realized that I shouldn’t be ashamed to have epilepsy and that I needed to fight back not just for myself, but for others with epilepsy that either had or will eventually be discriminated against as I was. This experience had given me a new perspective on life and illuminated a new career path in law. This was when I became involved with the Epilepsy Services Foundation. For six years now I have volunteered and have committed myself to this Foundation, but this foundation has helped me more emotionally, psychologically, and philosophically than I can ever return. I will be graduating from Stetson University Of Law in December and will continue to volunteer, support, and promote those that have epilepsy. I'm a living example; I'm epileptic and yes I can!

Client Served

Rating: 5

This is my daughter's story. She has Lennox Gastau Syndrome. Since she met Tom Orth and ESF, we feel like we are with the right people. They are always helping us with doctors and giving us whatever information we need to help us understand my daughter's condition.
They have been more than helpful, they make us feel like family. They are always looking for ways to get the families together so we can share our experiences as caregivers of kids with epilepsy.
I'm very happy that they are involved in our lives. Thank you. Mayra & Dianeliz

Client Served

Rating: 5

A year ago my 8 year old was diagnosed with epilepsy. We were thrown into a world we knew nothing about. My son was scared and felt different than other kids. As a parent I was also scared because I knew this diagnosis would give me anxiety. After his diagnosis I researched epilepsy groups in my area and Epilepsy Services Foundation, ESF, came up on a search. ESF was so helpful in providing us support, advice and resources to navigate through his diagnosis. ESF does such a great job by making my son go from feeling different and alone to being part of group of special kids who are just like him. They have held so many great events where my son has been able to connect with kids that have similar stories. I have also been able to connect with parents who have provided some great advice and suggestions to us. I cannot thank ESF enough to all the support this past year!

Professional with expertise in this field

Rating: 5

Words cannot describe the amount of ACTION that this foundation has taken to drastically improve the lives of those impacted by Epilepsy. It is truly one thing to talk the talk... but this organization does more.
Individuals, families, children, adults... anyone who has epilepsy on their mind... is at the center of everything that the Epilepsy Services Foundation does. They support by providing education about the disease, networking events that allow for friendships to be made, nights out promoting fun and bonding, holiday gatherings, hospital visits... and the easiest thing... is a smiling face that understands what you're going through. This foundation gives people an opportunity to share trials and triumphs, ask questions that receive answers, and be a part of an irreplaceable community.
Thank you for being so selfless in your everyday actions.

Board Member

Rating: 5

I am a 25-year donor and current board member. ESF gives children with seizure disorders the chance to just be kids. That is, we provide experiences that many children with seizure disorders either can’t or won’t enjoy on their own because of their medical condition. Imagine a child never having the opportunity to have their picture taken with Santa because of the fear of having a seizure. Our Christmas party brings Santa to them in a comfortable environment. Imagine being a young adult recently discovered to have seizures and having no peers to speak with. Our support groups and events allow these children to interact with other children who can relate and provide encouragement and comfort. Imagine being in your teens and never having ridden a horse, done a ropes course or had a sleepover with friends. Our week at Camp Boggy Creek allows children with seizure disorders to do these and many other things. I can only imagine the joy, pride and sense of accomplishment that this experience provides.
We help parents, too. The diagnosis of or ongoing treatment for epilepsy is an uncertain and frightening time. We provide resources and referrals to help them navigate their treatment options. Family weekends and special gatherings provide parents with an opportunity to share their hopes and fears with other parents in similar situations.
Please help us continue our efforts to provide seizure-affected families the chance to lessen their fears, better manage their disorder, and allow their children to feel normal, accepted, and just be one of the kids.

Board Member

Rating: 5

The Epilepsy Service Foundation provides a caring and supporting environment for patients and families going through this condition. They provide a network for patients with newly diagnose epilepsy so they know they are not are not alone through this process. The events that the E SF sponsor bring joy and happiness, and serve as bonding experiences for its participants. I am proud to serve as a member of the Professional Advisory Board and will continue to do so in order to provide expert advice to families need.

Client Served

Rating: 5

Epilepsy Services Foundation has been a big part of our life over the past few years. We have a sixteen year old daughter who has had epilepsy since the age of two. Over the years we have had the opportunity, through the foundation, to meet other families with similar struggles, get information from local doctors and learn about new medications.
We have also had many entertainment opportunities such as tickets to football games, the circus and ice skating shows.
Our biggest blessing has come from having the opportunity to send our daughter to Camp Boggy Creek the last six years. It is the highlight of her year and has been made possible only through the foundation. We will forever be thankful for her time there at the camp.
The Epilepsy Services Foundation has been a light to our family during some difficult times. The staff and volunteers work tirelessly for families like mine and can't thank them enough for all that they do.

Skip G.

General Member of the Public

Rating: 5

The Epilepsy Services Foundation here in Tampa has been a lifesaver for our family. Once we met Tom, our problems dealing with our son Brandon's epilepsy became much easier to solve. We had been struggling almost 17 years alone, and the older Brandon got, the tougher the challenges. Also, at the Retreat we met many others with similar problems and was able to offer our experiences , helping them. Tom is a great and knowledgeable man.

mihernandez

Volunteer

Rating: 5

What is there left to be said that has not been said already about the Epilepsy Services Foundation? My first volunteering event was last year at the Brewery and I was so impressed with not only its member's but the amount of people that came out to support them. That says a lot about what they are doing, and as a result, I was hooked! I have been to other fundraisers where even though it is a good cause, the turn outs were not so great. It is very easy to see why as Mr. Orth and his team demonstrate such love and compassion in what they do to the point that it is infectious. I am so proud to be a part and encourage others to do so as well as one will come away with a sense of purpose, empowerment and accomplishment due to the immense gratitude from all that are there from the kids to the adults, one can see that so much love and care is poured into each and every one of their participants, staff and volunteers. Thank You for allowing me to be part of your efforts in helping those affected with epilepsy.

Volunteer

Rating: 5

Great organization that puts families first. We have been involved with ESF for over 8 yrs and have met some amazing people and have made life long friends that we can always rely on for support with needed. ESF and Tom Orth's knowledge and support of those living with epilepsy is above and beyond. Thank you for all you have done for our family and all you continue to do for others and the community.

Previous Stories
1

Board Member

Rating: 5

I stumbled upon the Epilepsy Services Foundation when I was looking for a walk to participate in when my son was newly diagnosed with epilepsy. That day of the walk was the first time I felt someone truly listened and was interested in our story. ESF made such an impact on my entire family that we have been a part of the organization since. We have volunteered and participated in many functions. My son and I both spoke on Epilepsy Education Day for ESF last year and recently participated in the Meet and Greet program. I am honored to be apart of such an amazing organization that not only helps those affected with epilepsy but helps the entire family. Every time I talk to the Executive Director Tom Orth I learn something new, he is knowledgeable and passionate about helping others. ESF has many programs that can help everyone in the family. I am forever thankful for the help and support they have given my son and my family.

Volunteer

Rating: 5

The Epilepsy Services Foundation continues to give hope to patients, families, and caregivers year after year. I have had the honor to work with the foundation for almost 6 years and I continue to be humbled by the unselfish volunteers, board members, and physicians that strive to meet the needs of the ESF community. Epilepsy Services Foundation provides an unmet need to individuals with Epilepsy and their families through education, sponsorships, and many community events that support these individuals.

Volunteer

Rating: 5

My wife and I went to our first epilepsy event through this foundation and were extremely impressed.This foundation provides a great deal for the community. Anyone that has a relationship with someone that has epilepsy is able to network with others and provide guidance as well as understanding. Through events the foundation hosts you are able to learn about first hand experiences from families, feedback from doctors, and upcoming changes that may be coming to Florida. It's been an honor to volunteer with the foundation and watch it grow. Without the foundation it's easy to feel like you are in a vacuum.

Board Member

Rating: 5

I found this organization when I first moved to Tampa, FL and I so desperately needed a support system as I was dealing with the difficulties of having epilepsy. Not only have I received support, but I've been able to give back to others dealing with the effects of epilepsy through volunteering. This organization truly cares about the well-being of those with epilepsy and those who are affected by it (including parents, siblings, friends, etc.) They provide so much hope in what can be very difficult and trying times. Not only do they provide support, they also provide educational programs to help those affected by epilepsy take control of the disorder. My experience with the Epilepsy Services Foundation, Inc. has been nothing short of life-changing.

Professional with expertise in this field

Rating: 5

I have personally seen the amazing work of ESF in action over the last 8 years in the greater Tampa Bay Area. This organization is solid. Whether it is holding counseling sessions for teenagers challenged with seizures, running successful fundraisers to send kids to camp, or working with local providers counseling and supporting families affected by Epilepsy, this organization is stellar. On many occasions I have referred friends and family to ESF for support and the feedback I have recieved has always been one of gratitude and true appreciation. I have attended several of ESF’s community events where several area Neurologists and Epilepstologists have also attended - which is huge- as physicians see the true benefit and positive influence this organization has on patients and families challenged with Epilespy. To have practitioners take time out of their extremely busy schedules to attend these meetings - really says a lot for this orangization. It is with the highest regard that I fully endorse this non-profit organization, Epilepsy Services Foundation, Inc. - Laura Howard- Neurology “Epilepsy” Representative in the pharmaceutical industry.

Imari J Woods I.

Volunteer

Rating: 5

I have the opportunity to work with this foundation and see the dedication that is put forth towards helping those with epilepsy. They not only provide a fun outlet for children with epilepsy through their events, like walks and poster board competitions. But they also provide resources to the parents and those who interact with someone that has epilepsy on a day to day basis. This foundation focuses on the entire experience of a child who has epilepsy. They recently will be handing out fuzzy-little bears to hand out to newly diagnosed kids and teens.