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Jackie Aker

Director of PR/Media

Epilepsy Foundation

jaker@efa.org

 

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About the Walk to End Epilepsy

Epilepsy Foundation Announces the Launch of Bicoastal Walk to End Epilepsy and Expansion of Care & Cure Institute beyond California

Signature Initiatives to Provide Programs & Resources, Promote Greater Awareness and Action, and Address Gaps in Care 

LANDOVER, Md., August 8, 2018 —The Epilepsy Foundation today announced two major initiatives. The Epilepsy Foundation is taking the Walk to End Epilepsy® bicoastal in both Los Angeles and Washington, D.C. and in approximately 19 other cities across the country in 2018 and 2019. In addition, the Foundation is launching the Care & Cure Institute nationwide. These initiatives, which are expanding due to the merging of the Epilepsy Foundation of Greater Los Angeles (EFGLA) and Epilepsy Foundation, will promote stronger awareness and action, as well as enhance programs and resources. Furthermore, the Care & Cure Institute will more thoroughly address gaps in specialty care for many of the 3.4 million people living with epilepsy and their families in communities across the country.

“Building upon our long-term collaboration, we are thrilled to expand EFGLA’s very successful Walk to End Epilepsy to both coasts and communities across the country,” said Robert W. Smith, chair of the Epilepsy Foundation’s Board of Directors. “We will continue to strengthen our efforts to help individuals and families overcome the challenges of living with epilepsy and accelerate therapies to stop seizures, find cures and save lives.”

The two largest Walks take place on the West and East Coast, with the Walk to End Epilepsy at the Rose Bowl in Los Angeles on February 2, 2019 and the Walk to End Epilepsy on The National Mall in Washington, D.C. on April 27, 2019. Additional Walks to End Epilepsy are planned in other parts of the country in 2018 and 2019.

The annual Walk to End Epilepsy is a walk and run that brings the community together to affect positive change for care, rights, lives and research that benefit the epilepsy community. The Walks will attract nearly 10,000 people and raise more than $2 million in its first year to fund programs and services, research and awareness, trainings on seizure recognition and first aid, as well as improve access to specialty and supportive care for people living with epilepsy.

The Epilepsy Foundation is also rolling out EFGLA’s Care & Cure Institute nationwide. What started as a fundraising golf event in Los Angeles almost 13 years ago is now extending to other parts of California and beyond to support the training of pediatric epilepsy specialists in areas with few or no epilepsy specialists — such as Nevada and Oklahoma — to improve access to, and quality of, specialty care for the epilepsy community.

“One solution to improving the lives of people with epilepsy is to fund the training of more epilepsy specialists and this is an objective of the Care & Cure Institute,” said Mark Borman, an Epilepsy Foundation board member in Los Angeles and the national organization. “The extension of the Institute across the country not only helps improve access to specialty care, it will also foster research collaboration to find treatments and cures for epilepsy.”

To date, Care & Cure has raised more than $10 million and funded the specialty training of 26 fellows in Los Angeles and Orange Counties and is establishing endowments to train fellows in perpetuity. Those fellows have gone on to provide specialty care and participate in clinical research for children with epilepsy throughout California and as far as Florida and Michigan.  The Care & Cure endeavor will continue and strive to fill the gaps and improve access to specialty care in communities across the country.

For more than 50 years, the Epilepsy Foundation and its more than 50 network partners have sought to address some of the needs of the more than 3.4 million people in the U.S. and 65 million in the world with epilepsy and their families. Through its five-year partnership with the U.S. Centers for Disease Control & Prevention, the Foundation has helped to improve access to care for people with epilepsy, expanded its digital reach and online resources in homes across the country and ensured school personnel, first responders, seniors and caregivers and the public are better trained in recognition of seizures and first aid, in every state. Today, the Epilepsy Foundation continues to lead a nationwide movement to END EPILEPSY® and engage and mobilize the community to be part of the fight to END EPILEPSY.

For more information about the Walk to End Epilepsy or to find a Walk near you, please visit WalktoEndEpilepsy.org.

 

About Epilepsy

According to the World Health Organization, epilepsy is the most common serious brain disorder worldwide with neither age, racial, social class, national nor geographic boundaries. Epilepsy affects 3.4 million people in the United States today. It is the underlying tendency of the brain to produce seizures which are sudden abnormal bursts of electrical energy that disrupt brain functions.

About the Epilepsy Foundation

With a network of 50 local partners throughout the United States, the Foundation connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding $65 million for epilepsy research. Over the past 16 years, the Epilepsy Foundation has trained more than 500,000 school and community personnel about seizure recognition and first aid, assisted more than 108,000 people through its 24/7 Helpline, helped support 3,076 investigators in their early careers including the training of 26 neurology/epilepsy specialists, and made innovation and new therapies a key priority along with community services and education. To learn more and get involved, please visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook and Twitter.

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Epilepsy Facts & Stats

More people live with epilepsy than with autism spectrum disorders, Parkinson’s disease, multiple sclerosis and cerebral palsy — combined.

  • You can’t swallow your tongue during a seizure. It’s physically impossible.
  • You should NEVER force something into the mouth of someone having a seizure. Absolutely not! Forcing something into the mouth of someone having a seizure is a good way to chip teeth, cut gums, or even break someone’s jaw. The correct first aid is simple. Just gently roll the person on one side, support their head, protect from injury, and make sure their breathing is okay.
  • DON’T restrain someone having a seizure. Most seizures end in seconds or a few minutes and will end on their own. You can protect the person from injury by following simple first aid steps.
  • Epilepsy is NOT contagious. You simply can’t catch epilepsy from another person.
  • Anyone can develop epilepsy. Seizures start for the first time in people over age 65 almost as often as it does in children. Seizures in the elderly are often the after effect of other health problems like stroke and heart disease.
  • Most people with epilepsy CAN DO the same things that people without epilepsy can do. However, some people with frequent seizures may not be able to work, drive, or may have problems in other parts of their life.
  • People with epilepsy CAN handle jobs with responsibility and stress. People with seizure disorders are found in all walks of life. They may work in business, government, the arts, and all sorts of professions. If stress bothers their seizures, they may need to learn ways to manage stress at work. But everyone needs to learn how to cope with stress! There may be some types of jobs that people with epilepsy can’t do because of possible safety problems. Otherwise, having epilepsy should not affect the type of job or responsibility that a person has.
  • Even with today’s medication, epilepsy CANNOT be cured. Epilepsy is a chronic medical problem that for many people can be successfully treated. Unfortunately, treatment doesn’t work for everyone. AT LEAST 1 million people in the United States have uncontrolled epilepsy. There is still an urgent need for more research, better treatments and cures.
  • Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the U.S. as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition or may be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer’s disease, and traumatic brain injury.
  • You CAN die from epilepsy. While death in epilepsy doesn’t happen frequently, epilepsy is a very serious condition and individuals do die from seizures. The most common cause of death is sudden unexpected death in epilepsy (SUDEP). While there is a lot we still don’t know about SUDEP, experts estimate that 1 out of every 1,000 people with epilepsy die from SUDEP each year. People can also die from prolonged seizures (status epilepticus). About 22,000 to 42,000 deaths in the U.S. each year occur from these seizure emergencies.
  • What happens in a seizure may look different from one person to another. However, seizures are usually stereotypic, which means the same things or behaviors tend to occur in a person each time they have a seizure. The seizure behavior may be inappropriate for the time and place, but it is unlikely to cause harm to anyone. (Learn about types of seizures.)
  • People with epilepsy are usually not physically limited in what they can do.  During and after a seizure, a person may have trouble moving or doing their usual activity. Some people may have trouble with physical abilities due to other neurological problems. Aside from these problems, a person who is not having a seizure is usually not limited in what they can do physically.

Learn more at Epilepsy.com

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