Media Room

Epilepsy Foundation of Greater Los Angeles

Thank you for your interest in writing about the epilepsies and the Epilepsy Foundation of Greater Los Angeles. We want you to have easy access to information about our organization and about the epilepsies. This page provides links to our media stories, videos, photo albums and Enews.

Our Mission

The Epilepsy Foundation of Greater Los Angeles leads the fight to END EPILEPSY. And we participate in the Epilepsy Foundation’s nationwide mission to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives stop seizures and early death, find a cure and overcome the challenges created by epilepsy.

Our Description (broilerplate)

The Epilepsy Foundation of Greater Los Angeles is leading the fight to END EPILEPSY through care, advocacy, research and education. We offer a range of services and programs to help, support, care and advocate for, and empower those who are affected by the epilepsies and their caregivers. We educate the general public about epilepsy and how to recognize seizures and administer first aid. We support research for cures and the training and work of specialists in our region in order to improve access to specialty epilepsy care and increase epilepsy research in our region — giving people with epilepsy and their loved ones greater access to care today and greater hope for cures in the future.  

We invite everyone to join the fight to END EPILEPSY at www.EndEpilepsy.org. You can contact us at Help@EndEpilepsy.org and 800.564.0445. The Epilepsy Foundation of Greater Los Angeles is a 501c3 nonprofit organization. Our tax ID is 95-2046033.

 

Who We Serve

The Epilepsy Foundation of Greater Los Angeles is an ally with and advocates for individuals and families affected by epilepsy/seizure disorders. Our primary area of service includes the Counties of Los Angeles (9.95 million), Orange (3.0 million), San Bernardino (2.0 million) and Ventura (0.8 million). The combined population of our territory is over 15.75 million and at least 1% or about 160,000 people have epilepsy. However, many more are significantly impacted by epilepsy in their daily lives when you include family members, caregivers, and friends.

How We Are Established

The Epilepsy Foundation of Greater Los Angeles has been  in existence for over 55 years, but under different names. We are the only non-profit, 501(c)(3) charitable organization dedicated solely to serving people affected by epilepsy throughout this entire region. We are an independent non-profit organization that chooses to affiliate with the national Epilepsy Foundation headquartered in Landover, Maryland.

Contact Us

Susan Pietsch-Escueta, MPH
Executive Director
Epilepsy Foundation of Greater Los Angeles

310.670.2870 (office); 310.991.1756 (mobile)
SPietsch@EndEpilepsy.org

Epilepsies / Seizure Disorders
  • Definition and characteristics of the epilepsies

    • The most recent definition of epilepsy is as follows:
      Epilepsy is considered a disease of the brain defined by any of the following conditions: (1) At least two unprovoked (or reflex) seizures occurring >24 hr apart; (2) one unprovoked (or reflex) seizure and a probability of further seizures similar to the general recurrence risk (at least 60%) after two unprovoked seizures, occurring over the next 10 years; or (3) diagnosis of an epilepsy syndrome. 
      (Source: International League Against Epilepsy)
    • The previous definition of epilepsy was as follows and is still seen in much of the literature and media:
      The epilepsies are a spectrum of brain disorders ranging from severe, life-threatening and disabling, to ones that are much more benign. In epilepsy, the normal pattern of neuronal activity becomes disturbed, causing strange sensations, emotions, and behavior or sometimes convulsions, muscle spasms, and loss of consciousness. 
    • Epilepsies are characterized by seizures which are caused by abnormal electrical activity in the brain. Seizures range from sudden, uncontrolled body movements and changes in behavior to loss of awareness, changes in emotion, loss of muscle control, and shaking.
    • Some types of epilepsy remit or go away but some are chronic and even life-long.
    • Some people with epilepsy have more than one type of seizure.
    • Depending on age and medical history, some people with epilepsy may have a dual diagnosis with another neurological disorders as well — developmental delay, cerebral palsy, autism, dementia, and mental illness.

  • Diagnosis and treatment of the epilepsies

    • Besides a neurological evaluation and medical history, the common diagnostic tests for epilepsy include (1) an EEG or electroencephalogram which measures the electrical activity in the brain, and brain imaging scans including computed tomography (CT) scans and magnetic resonance imaging (MRI).
    • The epilepsies have many possible causes and there are several types of seizures. Anything that disturbs the normal pattern of neuron activity—from illness to brain damage to abnormal brain development—can lead to seizures. Epilepsy may develop because of an abnormality in brain wiring, an imbalance of nerve signaling chemicals called neurotransmitters, changes in important features of brain cells called channels, or some combination of these and other factors.
    • Treatments for epilepsy include many different kinds of anti-seizure medications, different surgical treatments, and a few different dietary therapies. 

  • Numbers of people affected by epilepsy

    • 1 in 26 people will be diagnosed with epilepsy in his or her lifetime. 
    • About 200,000 people will be diagnosed with epilepsy each year.
    • The epilepsies affect almost 65 million people in the world, almost 3 million in the USA, and about 160,000 in our 4-county region.
    • The number of people affected by epilepsy increases dramatically when considering the family members and friends.
    • Epilepsy affects more people than cerebral palsy, multiple sclerosis, muscular dystrophy and Parkinson’s disease — combined.

  • Epilepsy research

    • Epilepsy receives far fewer dollars per patient affected than any of these neurological disorders — cerebral palsy, multiple sclerosis, muscular dystrophy and Parkinson’s disease.
    • There are no cures.
    • There is active epilepsy research in our region but not nearly enough.

  • Impact of the epilepsies

    • About 30 percent of those with epilepsy live with uncontrolled seizures because no available treatment works for them.
    • It is estimated that about 50,000 people die from epilepsy related causes in the USA every year. Those causes include status epilepticus (prolonged seizures), sudden unexpected death in epilepsy also known as SUDEP, and other seizure related causes such as drowning and other accidents. 
    • Sudden unexpected death in epilepsy or SUDEP accounts for about 30% of all sudden deaths in children.
    • Of the 2.2 million troops who served in Afghanistan or Iraq, an estimated 440,000 (20%) will experience traumatic brain injury (TBI) and more than 100,000 (23%) of those are expected to develop post-traumatic epilepsy (PTE).
    • Epilepsy costs the USA approximately $15.5 billion each year.
    • Traumatic brain injury can result from sports-related injuries. Proper and quick recognition of and response to a concussive brain injury when it first occurs can help prevent further injury, the development of post-traumatic epilepsy or even death.

Quotes

You can use these quotes or contact help@endepilepsy.org to request other quotes.

“I am often struck with how important this cause is. It is a life threatening cause that demands the activism of everyone — and especially those with epilepsy and those who care for them.”
-Steven Baum, President, Board of Trustees, Epilepsy Foundation of Greater Los Angeles

“My son, Sebastian, has a severe form of childhood epilepsy. He is the bravest person I know. He inspires me to be part of this fight to End Epilepsy. I know most of my fellow trustees feel the same way. We are all inspired by the brave people with epilepsy whom we know.”
-Steven Baum, President, Board of Trustees, Epilepsy Foundation of Greater Los Angeles

“Time and again I have seen the importance of sharing personal stories of epilepsy. It is critical to End Epilepsy. We will not End Epilepsy if those with epilepsy do not share their stories. Each story is like gold in support of this fight.”
-Susan Pietsch-Escueta, MPH, Executive Director, Epilepsy Foundation of Greater Los Angeles

“Epilepsy is far more common than most people realize. In fact, epilepsy affects more people than cerebral palsy, multiple sclerosis, muscular dystrophy and Parkinson’s disease — combined. Sadly, however, it receives far fewer dollars per patient affected than each of those neurological diseases.” 
-Susan Pietsch-Escueta, MPH, Executive Director, Epilepsy Foundation of Greater Los Angeles

“We need awareness that helps the public understand about seizures and epilepsy and their impact on children, adults and families… At the core of what we are doing … is a very real and serious FIGHT.”
-Jeannett, mother of Jilly, LifeRearranged.com

Correct terms to use (and not use)

Inclusive language for writing about epilepsy

 

Phrase to use
Phrase NOT to use

person with epilepsy

epileptic

seizure

fit, spell, attack

epilepsy is a disease/disorder of the brain

epilepsy is a psychiatric or mental illness

person

patient (and other medical terms)

Coming soon – other guidelines on writing about persons with disabilities. 

 

Latest Press
  • March 20, 2017
    26.2 Miles to Raise Awareness: From Stadium to Sea

    Twelve END EPILEPSY® heroes participated in this past weekend’s activities for the Skechers Performance Los Angeles Marathon. Wendy Rodriguez tackled the Big 5K on March 18, while the other stellar runners – Susan Lyons, Matthew Norris, Ryan Bright, Heather Binns, Merriddee Hays, Deanna Smith, Tamy McCall, Alexandro Gracia, Jenny Shepherd, Mark Borman and his son, […]

  • February 10, 2017
    New Frontiers in Epilepsy Therapy and Care for Women with Epilepsy

    PROGRAM FOR WOMEN WITH EPILEPSY  More than one hundred people attended the New Frontiers in Epilepsy Therapy + Care for Women with Epilepsy on February 4, 2017. The Symposium was held in partnership with the Epilepsy Foundation of Greater Los Angeles and UC Irvine Health at the Hilton Waterfront Beach Resort in Huntington Beach. Keynote […]

  • January 20, 2017
    Wellness in the New Year Celebrated at the Winter Social

    Wellness in the New Year Celebrated at the Winter Social for Adults + Loved Ones Adults with epilepsy and their loved ones kicked off the new year embracing wellness tips at our Winter Social on January 8, 2017.  Registered Dietitians, Sarika Sewak, MPH, RD and Jennifer White, MS, RD, from Mattel Children’s Hospital and UCLA […]

  • Special Guest Visits with Troop #1843

    Scouts from Greater Los Angeles Troop #1843 welcomed a special guest speaker on Epilepsy.   Shannon Abdulwahab visited with the Troop on Sunday, January 15, 2017 to share her personal story while also educating the troop about epilepsy and seizures. The girls received End Epilepsy bracelets and sunglasses and left feeling more knowledgeable about a […]

  • November 28, 2016
    KLOS 95.5 FM Turned the Spotlight on Epilepsy

    The Epilepsy Foundation of Greater Los Angeles was invited to be a guest of “Spotlight on the Community”. Los Angeles based radio personality, Terri-Rae Elmer, interviewed Susan Pietsch-Escueta, Executive Director, on November 16, 2016.  The podcast (click here to listen) was featured on KLOS 95.5 FM and on its affiliated news/talk station KABC 790 AM.  […]

  • November 23, 2016
    ESPN LA’s ‘The Experience’ with LaFern Cusack Discusses Epilepsy

    Award winning on-air talent and producer, LaFern Cusack, dedicated an hour of her show, ‘The Experience’ with LaFern Cusack on ESPN LA (710 AM), to discuss epilepsy – from brain injury, athletes to veterans and beyond. Guests of the show were our very own Executive Director, Susan Pietsch-Escueta and Nathan Jones, Project Coordinator. Accompanying guests […]

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Photos+Videos

 

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