by Catherine Wysoczanski

Imagine living each day with a vicious stalker following your every move and never knowing when they will strike. You never know if they will attack while you are sleeping, in school, at work or when simply walking down the street. No matter where you go you are being followed. This stalker, which follows more than 65 million people, is known as epilepsy. While at times it may seem like life can be overtaken by this stalker, it is possible to understand epilepsy and advocate awareness throughout the community.

Epilepsy is a neurological condition of the brain that can affect anyone at any time. It is characterized by recurring seizures, which are physical reactions to sudden, brief disturbances in the electrical activity in the brain. “When our daughter, Alexa, was 3 years old she started having seizures,” says First Coast parent, Shauna Anderson. “After I saw the first couple I was trying to figure out what was happening. We found out that she has partial complex seizures,” she says. Shauna and her husband Jonathan learned that a partial complex seizure usually starts in the small area of the temporal or frontal lobe of the brain. The Epilepsy Foundation states that this type of seizure quickly involves other areas of the brain that affect alertness and awareness. Even if the person’s eyes are open and they make movements that seem to have a purpose, in reality “nobody’s home.” If the symptoms are subtle, other people may think the person is just daydreaming. “Alexa was having seizures on the hour every hour. Now she is doing a lot better and only has seizures two to three times a week. She is in third grade and we are blessed that she is so strong,” says Shauna. In the beginning Shauna and Jonathan were unsure of where to turn to get support. “There were so many things we could have done. We probably would have felt more educated with resources and support,” says Jonathan. “About a year after Alexa was diagnosed we found out about the Epilepsy Foundation of Florida. They have resources to help parents and people learn about epilepsy. We’ve gotten very involved and I joined the board [of directors] three or four years ago,” he says. “From a father’s standpoint I would try and connect with somebody to get more understanding of what is happening. It could be a lifetime of trying to figure this out. You have to be patient, and love and support your child. You will figure it out together.”

“Currently more than 375,000 Floridians are living with epilepsy,” says Viktor El-Saieh, executive director of the Northeast Branch of the Florida Epilepsy Foundation. “The Epilepsy Foundation of Florida’s goal is to educate people about what epilepsy is.

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We provide valuable services to both families and individuals that have been affected by epilepsy. It doesn’t matter what their financial circumstances are, we provide medical services, case management, counseling, support groups, education and much more,” he says. One of the biggest challenges the Epilepsy Foundation of Florida (EFOF) encounters is educating people about epilepsy. “It’s a difficult conversation to have because it’s extremely broad,” says Viktor. “Epilepsy affects everyone who has it in entirely different ways. Some people can be severely affected and others can lead a productive life.” The EFOF is one of the best resources to turn to when facing this diagnosis. There are two support groups that meet each month in Duval and Clay counties. This year, a new art therapy program launched in Gainesville with plans to move it to Jacksonville at some point in the future. The program, called Studio E, brings people who have epilepsy together for an eight-week art program. “The EFOF has brought in an art therapist for this program. The point is for people with epilepsy to be together in a group setting and let their creative sides flow. They get to do all different kinds of artwork with different mediums like painting and pottery,” says Viktor.

One of the biggest steps for those with epilepsy is spreading awareness. First Coast mom Debbie Whittle has been involved with EFOF since her daughter was diagnosed with epilepsy more than eight years ago. “One of the biggest ways that people can spread awareness is to get out there and talk about it. A lot of people are afraid of epilepsy and don’t want others to know they have it because of the stigma attached to it,” says Debbie. People often misunderstand epilepsy and others may hesitate to get help because of the stigma and stereotypes attached to epilepsy. A person may think they are experiencing an episode that they can simply shake off, while others do not seek treatment because they are concerned that
this stigma could affect their relationships with friends, coworkers and even potential employers. “My daughter’s friends were very supportive of her. The diagnosis was very difficult because she lost some of her freedom like being able to drive. She had already driven and knew what it was like, so to have it taken away was very hard,” says Debbie. “At that age you don’t want to be driven around by your mom. Right now she is doing fantastic and is seizure free,” she says. “It was such a learning experience for me, and I decided to get on board with the Epilepsy Foundation and try and educate people about epilepsy because there are so many different types of seizures. People just think of a grand mal seizure where someone is convulsing on the ground, but there are so many more types of seizures.” It is never easy for anyone to be diagnosed with epilepsy, but as long as they take the time to do research they can find a way to live a productive life and break that stigma.

“A lot is understanding what epilepsy is and what it is not,” says Dr. Harry Abram, pediatric neurologist at Nemours Children’s Clinic. “When we meet a patient for the first time, we spend an hour simply discussing it.

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There is a lot of literature available to help learn about epilepsy, but it’s important to find out as much as you can and be able to have all of your questions answered. It doesn’t mean that you aren’t going to college and it doesn’t mean that you can’t have a family. Even if someone has epilepsy, it is possible to lead a normal life,” he says. “Some children do outgrow their epilepsy and it’s important to be optimistic that these kids will be okay and their seizures can be controlled with medicines. On the other spectrum, it’s important that parents have their own outlet, so joining a support group is a good idea.” Local mom and neurologist, Dr. Georgia Gianakakos has seen both sides of the spectrum as a parent and neurologist. “My husband is also a doctor, and even as health care professionals we were blindsided and bewildered by our son’s diagnosis,” says Georgia. “One of our twin boys has primary generalized epilepsy. His seizures started at age 3 and he is now almost 6. We are thankful that his epilepsy is well controlled and he is otherwise healthy. We pray that he will outgrow the seizures. One of the best ways we’ve coped, and that others can cope, is to have a strong social
support system and education. These are imperative for family and patient health,” she says.

There are now many support groups through different social media handles like Facebook (EpilepsyFLA) and Twitter (@EFOF). Another way parents can get involved with advocacy is by having their child participate in Camp Boggy Creek. “Camp Boggy Creek was founded by Paul Newman for children with serious illnesses to get to go to camp and be a normal kid,” says Dr. Abram. The promise of the camp is that “every child, no matter what their illness is, can experience the transformational spirit and friendships that go hand in hand with camp.” The camp has specific weeks for certain illnesses. “It’s for all types of children. They have a week for children with cancer…a week for liver disease…a week for epilepsy and so on. It’s a chance for kids to spend time with other kids that are experiencing the same thing,” says Dr. Abram. One issue surrounding epilepsy is how frightening it can be since many people don’t fully understand it. “It’s not like having cancer or leukemia. You don’t have physical signs like losing your hair. You look just like any other normal person, which makes it even more difficult,” he says.

You can advocate for those living with epilepsy during Epilepsy Awareness month in November and by participating in the “Walk the Talk” event in April 2015. Together it is possible to reduce the misunderstanding, fear, discrimination and isolation that coincide with the stigma by educating others and increasing awareness through schools, education and even social media. As the EFOF says, “We can reduce the fear and misunderstanding, so the lives of millions of people around the world, people living with the condition and their loved ones, will be forever changed for the better.” Visit efof.org or epilepsy.com to learn more about how you can help end this stigma and work towards a cure.

Click HERE to access the article.

Click the photo below to watch EFOF Director of Medical Services, Dr. Jose Gonzalez, get interviewed by Univision about Medical Marijuana and Epilepsy.

 

PRESS RELEASE: October 4, 2012

 

ETP and EF Announce Merger to Create
New National Organization

New Epilepsy Foundation to Drive Education, Awareness, Supportive Care and New Therapies for Millions of People Living with Seizures

Washington, D.C., OCTOBER 4, 2012 -- The Epilepsy Foundation and the Epilepsy Therapy Project today announced an intention to merge. The new organization will have unparalleled reach and leadership through a nationwide supportive care network, broad-based public awareness, education and focus on accelerating the clinical development of innovative therapies for people with epilepsy. The Epilepsy Therapy Project will continue to work to accelerate new therapies in a timeframe that matters as the Epilepsy Therapy Project of the new Epilepsy Foundation.

“The reality we face today is that one-third of more than two million Americans living with epilepsy have no seizure control. A staggering one in 26 Americans will develop a form of epilepsy in their lifetime, and still epilepsy remains one of the most under-supported medical conditions in the nation. The coming together of the Epilepsy Foundation and the Epilepsy Therapy Project will create an organization with critical mass, energy and credibility,” said Warren Lammert, co-founder of the Epilepsy Therapy Project and the father of a child with epilepsy. “Rather than building two competing brands and infrastructures, we will invest together to advance new therapies in a timeframe that matters and improve the lives of people with epilepsy.”

The Epilepsy Therapy Project and Epilepsy Foundation together have provided funding to 42 of the 85 known drugs and devices in active development through an existing and successful partnership, resulting in the introduction of three new epilepsy products in the past year: the Visualase MR guided laser for minimally invasive epilepsy surgery, the SmartWatch seizure detection and caregiver alert device, and the NeuroSigma Monarch external Trigeminal Nerve Stimulation system for the adjunctive treatment of epilepsy.

“The Epilepsy Therapy Project has done an impressive job of uniting the clinical and research communities, advancing the epilepsy pipeline, and creating epilepsy.com - the foremost website for professionals and consumers,” said Brien Smith, M.D., Chairman, Epilepsy Foundation. “As one foundation, we have the opportunity to build an exceptional and highly focused organization - with the capability and expertise to make enormous strides in education, funding and the acceleration of new therapies.”

“As a physician who treats many people with epilepsy, I am reminded daily of the desperate need for new and better therapies and scientific breakthroughs for those with no treatment options. When we created the Epilepsy Therapy Project, we faced the same need 10 years ago as today – to raise the level of funding in the nation and accelerate the development and commercialization of new therapeutics and diagnostics,” said Orrin Devinsky, M.D., co-founder of the Epilepsy Therapy Project, Professor of Neurology, Neurosurgery and Psychiatry and Director of the NYU Comprehensive Epilepsy Center, New York University. “We need strength, synergy and unity to drive our mission moving forward. Once merged, the Epilepsy Therapy Project and the Epilepsy Foundation will focus scientific research and clinical medicine on the most important goal – new therapies, better control and a national call to action on behalf of everyone living with epilepsy.”

The merging of the Epilepsy Foundation with the Epilepsy Therapy Project will create a unified organization driving education, awareness, support and new therapies for people and families living with epilepsy, bringing together the mission and assets of both organizations:

  • epilepsy.com, the leading portal for people, caregivers and professionals dealing with epilepsy;

  • 48 affiliated Epilepsy Foundations around the country dedicated to providing free programs and services to people living with epilepsy and their loved ones;

  • Scientific, Professional and Business Advisory Boards comprised of leading epilepsy physicians, health care professionals and researchers, industry professionals and investors with experience in clinical care, as well as in the evaluation and commercialization of new therapies;

  • A track record of identifying and supporting important new science, translational research programs, and the most promising new therapies;

  • The Epilepsy Pipeline Conference, a leading global forum organized in partnership with the Epilepsy Study Consortium that showcases the most exciting new drugs, devices and therapies, and includes the Epilepsy Shark Tank; and

  • A professional advocacy network focused on increasing epilepsy government and military funding and initiatives at the federal, state and local levels.

“When your child is first diagnosed with epilepsy, the fear, isolation and questions can be paralyzing,” said Philip M. Gattone, President and CEO of the Epilepsy Foundation and the father of a child with epilepsy. “The new Epilepsy Foundation will be even stronger and more nimble in providing national leadership and support to the epilepsy community. By bringing together the resources of the Epilepsy Foundation with the Epilepsy Therapy Project and epilepsy.com, we will be able to reach all people with epilepsy - from the newly diagnosed to soldiers returning from war - and help them understand the condition, seek out the best treatment options and educate on scientific inroads and clinical trials. No one needs to feel alone in the fight against epilepsy.”

The Boards of both organizations have agreed to a Memorandum of Understanding which, when executed, will result in the creation of a newly merged organization known as the Epilepsy Foundation. The plan will be for the organizations to be fully united by January 1, 2013.

About Epilepsy
When a person has two or more unprovoked seizures, they have epilepsy. Epilepsy affects more than two million people in the United States and 65 million people worldwide. This year, another 200,000 people in the U.S. will be diagnosed with epilepsy. Despite all available treatments, 30 to 40 percent of people with epilepsy continue to experience seizures.

About the Epilepsy Foundation 
The Epilepsy Foundation, a national nonprofit with affiliated organizations throughout the United States, has led the fight against epilepsy since 1968. The Foundation’s mission is to stop seizures, find cures and overcome the challenges created by epilepsy. For additional information, please visit www.epilepsyfoundation.org.

About the Epilepsy Therapy Project 
The Epilepsy Therapy Project is a 501(c) (3) non-profit organization whose mission is to accelerate ideas into therapies for people living with epilepsy and seizures. Founded in 2002 by a group of parents, distinguished physicians, and researchers, the Epilepsy Therapy Project supports the commercialization of new therapies through direct grants and investments in promising academic and commercial projects. For more information about epilepsy, epilepsy treatment and the epilepsy pipeline, please visit our website,www.epilepsy.com.

For Epilepsy Therapy Project
Kim Macher, Executive Director
540-687-8077, ext. 100
kim@epilepsytherapyproject.org

For Epilepsy Foundation
Ken Lowenberg, Senior Director,
Communications
301-918-3773
klowenberg@efa.org

For Media Inquires
Karen L. Bergman
kbergman@bccpartners.com
650-575-1509