Spotlight On Over 60 Years of Serving People with Epilepsy in Long Island

EFLI Hosts Workshop

Epilepsy News From:

Sunday, June 14, 2020

This month, we shine the spotlight on Epilepsy Foundation Long Island (EFLI). This local Foundation has served the Long Island area since 1953. There are approximately 35,000 people on Long Island living with epilepsy. EFLI reaches individuals, families, and professionals across Long Island through their trainings, support groups, clinic, community events, and more.

Training and Education in Long Island

EFLI provides the following educational programs:

A few highlights from the last year of EFLI’s training efforts include:

  • 34 school nurses were trained at a Nassau County regional meeting of the New York State School Nurse Association.
  • Over 200 licensed practical nurses (LPNs) trained with the Vocational Education and Extension Board School of Practical Nursing.
  • Trained 31 school nurses in conjunction with the Board of Cooperative Educational Services.
School Nurse Training in Long Island

“Even though they are nurses, they [the nurses with NYSASN] feel that it is taken more seriously when receiving formal training from an Epilepsy Foundation educator,” said Janet Romeo, Community Education Coordinator. “They continually provide positive feedback regarding the clear and comprehensive information that they receive from us.”

Other Community Outreach

When called to do a training in their local community, EFLI always responds.

From last year to present day, EFLI has provided over 100 presentations to 2,300 people. This includes both trainings and educational events and presentations.

“I do a lot of speaking to individuals at universities, senior services organizations, assisted living and at-home services,” said Janet. “Any organization that asks us, we will come to speak.”

Before the COVID-19 pandemic, EFLI also provided community education workshops in the evening approximately once per month.

“We invite one of our neurologists or other professionals come and talk about epilepsy,” said Janet. “We sometimes try to branch out about behavioral health concerns and other co-existing conditions.”

EFLI also provides information at health fairs, community events, community fairs, and more throughout the year. In combination with these efforts and their regional conference in 2019, they reached over 170 people with information about epilepsy.

"Our Walk to END EPILEPSY® has grown exponentially," said Janet. "In 2019, 800 people with epilepsy and their supporters walked with us."

Going Virtual To Provide Support

Due to the COVID-19 pandemic, EFLI has shifted the 3 support groups (young adult group, parent group, and professional group for adults) that they run out of their East Meadow office to virtual.

“We are finding that virtual is the way to go,” Janet said. “People with epilepsy can’t always drive and don’t always want to depend on someone to drive them. Also, some of our support group members have children with epilepsy which can make it hard for them to travel.”

Over the summer, EFLI is shifting many of its workshops to go virtual as well.

“Holding virtual workshops is something we’ve talked about for a while now,” said Irene Rodgers, Director of Development & Epilepsy Services. “Many of our events are held in Nassau County and we often hear it’s hard to get here from Suffolk County on public transportation."

More Services and Support from EFLI

  • An epilepsy services and referral line that receives 150 calls per year.
  • Participation in Teens Speak Up! and Public Policy Institute as well as support for the Seizure Safe Schools initiative.
  • A newsletter that reaches over 3,000 individuals.
  • Helping parents navigate any accommodations their child with epilepsy may need in school.
  • A behavioral health clinic that provides support for adults and children. These services are covered by insurance, Medicare, and Medicaid. Services are currently being provided via telehealth.

Regarding their clinic services, Irene said, “People are really responding to our telehealth services because they want to remain connected and they don’t have to worry about having a family member get them to us.”

Thank you to Epilepsy Foundation Long Island for the education and support you provide to professionals and people living with epilepsy in your region!

Authored by: Liz Dueweke MPH on 6/2020

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

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