Epilepsy Foundation Indiana Logo

Epilepsy Foundation - Indiana Office - 1100 West 42nd Street, Suite 140, Indianapolis, IN 46208 

Our Mission

Our mission 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.

COVID-19 Update

As we deal with COVID-19 across Indiana we at the Epilepsy Foundation want to continue to do what we can to support everyone dealing with epilepsy and seizures.  This includes providing support and education as well as raising awareness.  We also have to do our best to adhere to social distancing because some people with epilepsy regardless of seizure control have other health conditions that put them at higher risk from COVID-19. For more information on Concerns About COVID-19 (Coronavirus) and Epilepsy click here.
 
Here are some of the things we are adding or continuing to do during this time:
  • Virtual Office Hours – our staff will host office hours where we will leave Zoom open each Thursday from 11:00 AM to 1:00PM through the states initial mandated shelter in place order of April 7th. Anyone can click on this link to discuss anything dealing with seizures, epilepsy or the Epilepsy Foundation - https://zoom.us/j/424436453 
  • Zoom hang outs – We also open up our Zoom meeting anyone can just chat face to face with others and connect every Tuesday from 1:00 PM to 3:00 PM through the same period by using this link - https://zoom.us/j/906338080. This does not have to be about epilepsy items. It is just a chance to be social and talk with others. With so many of us in our homes it is a chance to talk about any interests you would like.    
  • Live Webinars: Seizure Training for School Personnel
    • In addition to online and in-person training, the Epilepsy Foundation offers live webinars twice a month for school personnel. Upon finishing the program, including pre- and post-tests, participants will get a certificate of completion. Click here to learn more/how to register.
Upcoming Trainings
  • March 31, 2020 Training - 4:30-5:30 p.m. ET
  • April 16, 2020 Training - 12:00-1:00 p.m. ET
  • April 28, 2020 Training - 4:30-5:30 p.m. ET
  • May 12, 2020 Training - 4:30 p.m.-5:30 p.m. ET
 
  • Zoom support groups - one of our regular support group leaders is providing Zoom support groups every Thursday at 6:00 PM.  If you would like to join one of the online groups you can by clicking here - https://zoom.us/j/688995341
  • Seizure Safe Schools Train the Trainer - As we gear up for the Seizure Safe Schools to go into effect on July first we plan on getting a lot of teachers trained on seizure recognition and first aid and we need a lot more people that can help with the trianing. We will be hosting a Train the Trainer program on April 21st via Zoom to develop a certified training program for School Personnel trainers across the state. Reach out to our Program Coordinator Alyssa Edwards for more information if you are interested. 
  • Facebook Live - Patty Osborne Shafer RN - April 22nd 7:30 PM - We are continuing our popular Facebook Live series and are happy to have Patty Shafer joining us for our April event.  Go to our Facebook page for updates and to view past recordings. Patty is the senior director for health information and resources and the associate editor of epilepsy.com for the Epilepsy Foundation. She has worked for many years as an epilepsy clinical nurse specialist at the Comprehensive Epilepsy Center, Beth Israel Deaconess Medical Center in Boston, Massachusetts. She has been involved with epilepsy.com and the Epilepsy Therapy Project for many years.
  • Camps – At this time we still plan to have both our Summer Camp and Fall Family Camp which provide totally free experiences for kids with epilepsy and their families to enjoy the Center for Courageous Kids and their camp that is uniquely designed for kids of all types to enjoy. We will continue to monitor state and national guidelines to work with our partners to provide the opportunities in the safest possible manner.  
  • Give 26 – New campaign that is simple campaign that can help us raise awareness and much needed funds. 1 in 26 people get epilepsy and if one in 26 people touched by epilepsy can give $26 and put the car magnet you will receive in the mail on the back of your car it would go a long way to raise awareness and support programs!  Click here for more info.
  • Online Ohio Expo - Saturday April 4th  - Lots of free great sessions we can now join online.  Check out the link for details -  https://www.ohioepilepsy.org/epilepsy-expo 
  • Project Uplift (shared by Ohio chapter): Project Uplift starting April 2 that anyone is welcome to use. 
    Learn skills using mindfulness to manage and improve stress, anxiety and depression. The program is free. A small group meets by phone, weekly for eight weeks, learning skills and practicing to better manage stress, anxiety or depression. 
  • Facebook page: https://www.facebook.com/events/227431301616106/ 
  • Twitter posts twitter.com/ohioepilepsy
  • Advocacy                 
    Epilepsy Foundation Leads Efforts to Ensure Access to Treatments During COVID-19 Pandemic.

    The Foundation applauds government efforts so far in response to the COVID-19 pandemic. As Congress continues working on several economic stimulus packages, the Foundation is leading efforts to ensure people of all ages have access to essential and oftentimes life-saving treatments and supplies for serious and chronic conditions in the next legislative package. 

    On March 20, the Foundation sent a letter signed by almost 100 patient and disability community organizations urging Congress and the Administration to take action to address numerous issues that affect our community. Click here to find out more

Advocacy Update 

On March 27, Congress passed and the president signed the Coronavirus Aid, Relief, and Economic Security (CARES) Act (H.R. 748), the third package to provide relief and support given the COVID-19 pandemic. 

We are amazed by and grateful for the support from the community for rising to the occasion and taking action - over 1,700 advocates sent 5,315 letters to Congress! 

Many provisions were included in the package that will be of support to people with epilepsy, including:

  • Up-to 90-day extra supply of medication for those enrolled in Medicare;
  • Direct one-time payments of up to $1,200 for individuals making up to $75,000 and up to $2,400 for married couples making up to $150,000, plus an additional $500 per child; individuals making up to $99,000 and couples making up to $198,000 would receive slightly less;
  • $600 per week for unemployment above standard state benefits for up to four months and allows for 13 weeks of benefits beyond the standard number of weeks of benefits when the individual remains unemployed;
  • High deductible health plans with a health savings account are required to cover telehealth services prior to the individual reaching his/her deductible;
  • Funding for an education stabilization fund-which, in part, is to help ensure that students with disabilities needs are met; and
  • Funding to various federal departments and agencies to research and better understand COVID-19, for public health preparedness and response and ensure access to treatments, as well as to health systems to better fight the pandemic.

While we applaud government efforts so far, there is still more that must be done for our community and others living with serious and chronic conditions to access a necessary supply of essential treatments. Congress has already started discussing a fourth COVID-19 package. The Foundation will continue to advocate and keep you apprised of further opportunities for action during these unprecedented times. 

_________________________________________________

Monthly E-Newsletter:

The Epilepsy Foundation of Indiana sends out an electronic newsletter once a month to keep the community informed and up to date on what we are doing across the state, and on what is happening within the epilepsy community. Our newsletter is FREE and easy to subscribe to. Visit here to sign up!

End Epilepsy Campaign 

df.PNG
 

"Epilepsy can affect anyone with a brain. An anyone with a brain can affect epilepsy". Let's use our brains to #EndEpilepsy by increasing awareness and changing the conversation around epilepsy. If you would like to learn more about our new campaign and how you can help #EndEpilepsy, please visit our website here: https://endepilepsy.org/ 

Seizure Safe School Act

Indiana Governor Signs Bill Championed By Epilepsy Foundation Of Indiana Mandating Training Of School Personnel On Seizure First Aid

Goes into effect July 1, 2020

The Epilepsy Foundation of Indiana is proud to announce the passing of theSeizure Safe School Act, which makes certain that school personnel, nurses, teachers and volunteers are able to recognize and respond appropriately to a student experiencing a seizure.

There are three components to the legislation: 

1. Requiring school personnel to complete a seizure recognition and first-aid response training 

2. Mandating that the Seizure Action Plan is made part of the student's file and made available to school personnel and volunteers responsible for the student 

3. Ensuring that any FDA-approved medication prescribed by the treating physician is administered to the student living with epilepsy 

If you are interested in setting up a school training at your school, please contact aedwards@efa.org

Visit us on Social Media!

Facebook

 

@EpilepsyFoundationofIndiana

 

Twitter

 

@indianaepilepsy

 

Instagram
 

 

@indianaepilepsy 

 

Toll Free Helpline: 1-800-332-1000 – 24 hours a day, 7 days a week

The Epilepsy & Seizures 24/7 Helpline has trained information specialists standing by to answer your questions about epilepsy and seizures and provide you with help, hope, support, guidance, and access to national and local resources.

 

Y<