Epilepsy Foundation

Epilepsy Foundation and The Cameron Boyce Foundation Launch Initiative to Raise Awareness about Epilepsy and the Risk of SUDEP

Retrieved on: 
Wednesday, November 13, 2019
Medical terminology, Sudden unexpected death in epilepsy, Medicine, Health, Epilepsy Foundation, Epilepsy, Articles

LANDOVER, Md.and LOS ANGELES, Nov. 13, 2019 /PRNewswire/ --Epilepsy Foundation and The Cameron Boyce Foundation launched a new initiative called " K(NO)W SUDEP NOW " to raise awareness about epilepsy and the risk of sudden unexpected death in epilepsy (SUDEP), particularly among youth and young adults.

Key Points: 
  • LANDOVER, Md.and LOS ANGELES, Nov. 13, 2019 /PRNewswire/ --Epilepsy Foundation and The Cameron Boyce Foundation launched a new initiative called " K(NO)W SUDEP NOW " to raise awareness about epilepsy and the risk of sudden unexpected death in epilepsy (SUDEP), particularly among youth and young adults.
  • "K(NO)W SUDEP NOW is about accelerating research and education to end SUDEP," said Sally Schaeffer, senior director of the Epilepsy Foundation's SUDEP Institute.
  • Improving public awareness of epilepsy and SUDEP will drive more research dollars to help end SUDEP and END EPILEPSY.
  • Following the passing of their son Cameron Boyce due to SUDEP, Victor and Libby expanded the focus of the foundation Cameron had established earlier this year to include epilepsy and SUDEP.

Epilepsy Foundation Teams Up with Omaze to Offer a Once-in-a-Lifetime Experience to Meet Lady Gaga and Attend Her Vegas Residencies

Retrieved on: 
Tuesday, October 8, 2019
Health, Medicine, Clinical medicine, Omaze, Epilepsy Foundation, Epilepsy in animals, Epileptic seizure, Epilepsy, Seizure types

Fans donating as little as $10 to benefit the Epilepsy Foundation get 100 chances to win this unique experience.

Key Points: 
  • Fans donating as little as $10 to benefit the Epilepsy Foundation get 100 chances to win this unique experience.
  • Proceeds from the campaign support the Epilepsy Foundation's efforts to END EPILEPSY, accelerate therapies to stop seizures, find cures and save lives.
  • "We are excited to kick off this campaign with Omaze and honored that Lady Gaga partnered with Omaze to benefit the Epilepsy Foundation and offer this experience to her fans," said Geoff DeLizzio, chief development officer, Epilepsy Foundation.
  • Over a lifetime, one in 10 people will have a seizure, and one in 26 will be diagnosed with epilepsy.

Epilepsy Foundation Rolls Out Seizure Safe Schools Initiative Nationwide

Retrieved on: 
Monday, September 16, 2019
Health, Medicine, Clinical medicine, Epilepsy Foundation, Epilepsy, Epileptic seizure, Seizure

LANDOVER, Md., Sept. 16, 2019 /PRNewswire/ -- Epilepsy Foundation today announced it is rolling out its Seizure Safe Schools initiative nationwide.

Key Points: 
  • LANDOVER, Md., Sept. 16, 2019 /PRNewswire/ -- Epilepsy Foundation today announced it is rolling out its Seizure Safe Schools initiative nationwide.
  • "For students living with epilepsy, it is important that schools are well-equipped with the tools necessary to provide a safe and enriching environment," said Laura Weidner, vice president, Government Relations & Advocacy, Epilepsy Foundation.
  • In April 2018, Kentucky became the first state to pass into law the Lyndsey Crunk Act (HB 147), which helped to create the model bill for the Seizure Safe Schools initiative.
  • In collaboration with the Epilepsy Foundation of Kentuckiana, Lyndsey Crunk a 17-year-old Epilepsy Foundation Teens Speak Up!

Epilepsy Foundation Strengthens its Impact in Southern California with New Chapter in Orange County

Retrieved on: 
Monday, July 29, 2019
Epilepsy Foundation

ORANGE COUNTY, Calif., July 29, 2019 /PRNewswire/ --The Epilepsy Foundation is strengthening its impact in Southern California with the creation of a new chapter in Orange County with dedicated staff to serve the more than 38,000 people with epilepsy in the county.

Key Points: 
  • ORANGE COUNTY, Calif., July 29, 2019 /PRNewswire/ --The Epilepsy Foundation is strengthening its impact in Southern California with the creation of a new chapter in Orange County with dedicated staff to serve the more than 38,000 people with epilepsy in the county.
  • "Orange County is poised to build on the tremendous momentum of the past decades created by the Epilepsy Foundation of Greater Los Angeles.
  • Epilepsy Foundation Orange County is led by Executive Director Shannon Abdul-Wahab, a person with epilepsy, mother of three and aunt to a 14-year-old boy with epilepsy.
  • Epilepsy Foundation Orange County provides a variety of programs and services throughout the county at no cost, including:

Epilepsy Foundation Appoints New Board Members

Retrieved on: 
Wednesday, July 17, 2019
Epilepsy Foundation, Epilepsy

LANDOVER, Md., July 17, 2019 /PRNewswire/ --Epilepsy Foundation announced today it has elected three new board members who bring their professional expertise and personal epilepsy journeys to the Foundation's already strong Board of Directors.

Key Points: 
  • LANDOVER, Md., July 17, 2019 /PRNewswire/ --Epilepsy Foundation announced today it has elected three new board members who bring their professional expertise and personal epilepsy journeys to the Foundation's already strong Board of Directors.
  • The newest board members include: David Hawk, person with epilepsy and chief executive officer and chairman of Hawk Investments; Adam Kaller, parent of a teen with epilepsy and equity partner at Hansen Jacobson; and Rebekah Walker, parent of a child with epilepsy.
  • "We are excited to welcome these epilepsy warriors and visionary leaders to continue to strengthen the leadership and impact of our board," said Robert W. Smith, chair of the Epilepsy Foundation's Board of Directors.
  • 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 and supporting 3,076 epilepsy investigators and specialists in their early careers.

Epilepsy Foundation Applauds the American Medical Association's Decision to Encourage Use of Telemedicine Programs

Retrieved on: 
Thursday, June 27, 2019
Health, Medicine, Clinical medicine, Epilepsy Foundation, Epilepsy, Epileptic seizure, Neurology, Orrin Devinsky

LANDOVER, Md., June 27, 2019 /PRNewswire/ --Epilepsy Foundation applauds the recent decision by the American Medical Association (AMA) to encourage greater use of telemedicine programs, such as Project ECHO(Extension for Community Healthcare Outcomes), to improve healthcare provider education and access to care for people in rural and underserved communities.

Key Points: 
  • LANDOVER, Md., June 27, 2019 /PRNewswire/ --Epilepsy Foundation applauds the recent decision by the American Medical Association (AMA) to encourage greater use of telemedicine programs, such as Project ECHO(Extension for Community Healthcare Outcomes), to improve healthcare provider education and access to care for people in rural and underserved communities.
  • Many primary care providers are not able to address the challenges of difficult-to-control seizures or comorbid conditions and require access to epilepsy specialists.
  • In the fall of 2019, the Epilepsy Foundation plans to expand the ECHO Epilepsy/Neurology and school nurse programs, as well as add new sessions, publish results in a medical journal, and present findings at an upcoming medical meeting for both programs.
  • The Epilepsy Foundation is leading the fight to END EPILEPSY.

Prometheus Research and HealthVerity Announce Selection by Epilepsy Foundation to Develop a Community Data Resource

Retrieved on: 
Monday, June 24, 2019
Deities, Greek mythology, Epilepsy Foundation, Prometheus, Epilepsy, New Haven, Connecticut, Kress

NEW HAVEN, Conn., June 24, 2019 /PRNewswire/ --Epilepsy Foundation, the largest national epilepsy advocacy organization, has selected the team of Prometheus Research and HealthVerity to develop a new data infrastructure capable of creating the largest hub of repurposable data on epilepsy in the world.

Key Points: 
  • NEW HAVEN, Conn., June 24, 2019 /PRNewswire/ --Epilepsy Foundation, the largest national epilepsy advocacy organization, has selected the team of Prometheus Research and HealthVerity to develop a new data infrastructure capable of creating the largest hub of repurposable data on epilepsy in the world.
  • "We are excited for this opportunity to partner with HealthVerity on this remarkable initiative," said David Voccola, a co-founder of Prometheus Research.
  • "We are confident that together we will create one of the most impactful disease data resources available anywhere in the world."
  • "This new relationship is a natural fit for all three partners," said Andrew Kress, CEO and Co-founder of HealthVerity.

Epilepsy Foundation And Its Partners Announce Epilepsy Learning Healthcare System

Retrieved on: 
Monday, June 17, 2019
Health, Epilepsy Foundation, Epilepsy, Medicine

LANDOVER, Md., June 17, 2019 /PRNewswire/ -- Today, the Epilepsy Foundation and its partners announced the launch of the Epilepsy Learning Healthcare System (ELHS), a multi-stakeholder collaboration to improve outcomes by implementing best practices and continual learning.

Key Points: 
  • LANDOVER, Md., June 17, 2019 /PRNewswire/ -- Today, the Epilepsy Foundation and its partners announced the launch of the Epilepsy Learning Healthcare System (ELHS), a multi-stakeholder collaboration to improve outcomes by implementing best practices and continual learning.
  • "Our vision for the Epilepsy Learning Healthcare System is for all people with epilepsy to live their highest quality of life, striving for freedom from seizures and side effects, and we won't stop until we get there," said Brandy Fureman, Ph.D., vice president of research & new therapies, Epilepsy Foundation.
  • Our current healthcare and community services system is fragmented; we intend to change that with a system where we learn from every person with epilepsy, and in turn, improve outcomes for everyone living with epilepsy."
  • Community-based partners include REN organizations and the local Epilepsy Foundation network.Patients and caregivers "co-produce" the activities of the ELHS through the Community Engagement Core.

Epilepsy Foundation Earns Highest Rating from Charity Navigator

Retrieved on: 
Wednesday, June 5, 2019
Epilepsy Foundation, Health, Epilepsy

This is the first time the Foundation has received this top distinction from Charity Navigator, America's largest independent charity evaluator.

Key Points: 
  • This is the first time the Foundation has received this top distinction from Charity Navigator, America's largest independent charity evaluator.
  • This recognition makes the Epilepsy Foundation the only epilepsy advocacy organization with local offices in communities throughout the U.S. with a 4-star Charity Navigator rating.
  • Since 2002, using objective analysis, Charity Navigator has awarded only the most fiscally responsible organizations a 4-star rating.
  • 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 and supporting 3,076 epilepsy investigators and specialists in their early careers.

Epilepsy Foundation of Greater Los Angeles Cancels its Walk to End Epilepsy® Planned for February 2 at the Rose Bowl Due to Weather-Related Safety Concerns

Retrieved on: 
Saturday, February 2, 2019
Epilepsy Foundation, Epilepsy

The annual Walk to End Epilepsy has always been an enjoyable and unified event for our community but at the end of the day, people's safety is what's most important."

Key Points: 
  • The annual Walk to End Epilepsy has always been an enjoyable and unified event for our community but at the end of the day, people's safety is what's most important."
  • To date, the Walk to End Epilepsy has raised more than $435,000.
  • The Foundation is challenging at least 2,000 End Epilepsy warriors to each raise or donate $100 to help exceed the Foundation's $600,000 fundraising goal for the Walk.
  • As the local chapter of the Epilepsy Foundation, the Epilepsy Foundation of Greater Los Angeles (EFGLA) is the only charitable organization dedicated solely to serving people affected by epilepsy in the entire four-county region of Los Angeles, Orange, San Bernardino and Ventura.