Reaching More Epilepsy Communities in Indiana

Local Office Spotlight

Epilepsy News From:

Tuesday, April 23, 2019

Epilepsy Foundation of Indiana

This month, we are shining a spotlight on the Epilepsy Foundation of Indiana (EFIN) which is striving to grow and serve the 69,500 Hoosiers who are living with epilepsy. Through this outreach, they are creating ways to connect both locally and digitally to provide more support across the state.

For National Minority Health Month, we are also highlighting their work reaching minority communities. Indiana's efforts are further supported by the Foundation's cooperative agreement with the Centers for Disease Control and Prevention, particularly in regards to outreach to minority communities, including those in rural and underserved areas.

Outreach, Education, and Support

Indiana staff and volunteers travel the state to provide free trainings, informational meetings, and resources.

Indiana has trained more than 100 teachers and school nurses in the last six months and are expanding their Epilepsy Foundation educational programs.

Indiana shares the Epilepsy Foundation materials that cover youth, families, men, women, seniors, first aid, SUDEP (sudden unexpected death in epilepsy), and more.

EFIN provides in-person and digital support for people with epilepsy throughout the state. They do this by working with volunteers who lead local support groups in Indianapolis, Central Indianapolis, Evansville, and Fort Wayne. Support group leaders are offered monthly meetings for support and feedback as well as promotion of their events. There are also two new Facebook support groups, one for adults and one for families in Indiana, so there is always a chance for connection.

#EpilepsyEquity

EFIN has partnered with D.U.O. EmpowerMEnt Services to focus on epilepsy and seizures, mental health, and education in minority communities.

Woman presents power point on epilepsy 101

They hosted the event, "#EpilepsyEquity & Seizure Awareness Luncheon for Providers," to meet with different organizations that provide direct services to the community. Attendees were trained on epilepsy and proper first aid responses for seizures.

"We strive to form new relationships in order to better serve the epilepsy community," said Executive Director of EFIN Ryan Keys. "We also have an event planned for May 18th, '#EpilepsyEquity & Seizure Wellness Retreat' with D.U.O. EmpowerMEnt Services to connect to our minority communities and not only discuss epilepsy, but also mental health and self-care."

Seizure Safe Schools

The volunteers and staff of EFIN have been working diligently to pass Seizure Safe Schools legislation. The current bill, House Bill 1082, has been approved by the House, passed the Senate, and has been sent back to the House to approve changes that the Senate made to strengthen the bill. There is strong hope that it will get approved by the House and then head to the Governor's desk for approval.

The legislation would require that new and current school personnel receive seizure recognition and first-aid response training every 5 years. It would also require that schools use a seizure action plan for each student with epilepsy or a seizure disorder, which details how to support individual needs with any seizure activity and would be available to all personnel responsible for the student. Lastly, the bill ensures the administration of an FDA-approved rescue medication or medication prescribed by the student's health care provider.

More from EF IN

  • Monthly Facebook Live events: Facebook Live events provide Hoosiers a regular chance to connect, find out information about epilepsy, and share questions and concerns.
  • Living with Epilepsy Series: EFIN has a free quarterly education series to inform people about epilepsy with steps to take for better outcomes and resources that are available. A local neurologist is present to answer medical questions and concerns and the events are held in different regions around the state.
  • Summer Camp and Fall Family Camp: Indiana provides free camps for youth with epilepsy and their siblings (summer) and families (fall) with expert medical staff, activities, food, and lodging all provided. Summer camp registration is now open. Head over to http://www.courageouskids.org, or call the camp admissions office at (270) 618-2912.
  • Walk to END EPILEPSY®: Indiana is proud to expand walks to more communities around the state. There are confirmed walks in Bloomington, Evansville, and Indianapolis.
  • Connections to Services: EFIN staff are continually working through advocacy and partnerships to find better support and services for individuals and families dealing with epilepsy.

Thank you to the Epilepsy Foundation of Indiana for their hard work reaching Hoosiers living with epilepsy, including minority communities!

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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