Epilepsy Awareness Programs

[Bernard]

After reading about Elisa's difficulty in getting help with an epilepsy awareness program, I decided to do a little research. Here's what I found:

School Alert helps teachers and other staff to recognize seizures, to do the right thing with the right kind of first aid, and to help the other children in the school community be more accepting and understanding of the child with seizures.

The School Alert program is supported by pamphlets, videos, and a new, in-depth first aid training curriculum.

The School Alert program of the Epilepsy Foundation of America (EFA)

What if there isn’t a local EFA affiliate in my area?
The benefits of a coordinated School Alert program, including outreach, organized content, and a cadre of trained and knowledgeable speakers, are apparent. However, even in the absence of a local epilepsy organization to implement an ongoing School Alert program, parents and schools nationwide can access the materials, including an array of videos and manuals, to learn about epilepsy. In the absence of a local epilepsy organization, parents can offer to work with the appropriate school personnel, typically a school nurse or health educator, to gather and review available materials and help plan a presentation.

Guide for Teachers and Parents - Epilepsy.com

H.O.P.E. Mentors are individuals who are living with epilepsy or family members who have made a commitment to share their personal experiences with epilepsy through this program.

Each mentor must successfully complete a training program to become a certified H.O.P.E. mentor. Through this training, mentors are taught the program curriculum developed by leaders in the field of epilepsy.

...

If you would like to schedule a H.O.P.E. Mentor presentation, it is as simple as a toll-free telephone call: (877) HOPE 4 YOU or (877) 467-3496

H.O.P.E. Mentoring Program

[Dianne]

Hi All

On a slightly different tack, I've just done an 'Epilepsy Awareness' session at my son's place of employment, covering signs and indications of an imminent seizure, what a seizure looks like and how it progresses, emergency first-aid after the seizure

Its amazing, people are terrified of E, and have no idea how to deal with it

Dianne

[Elisa]

Thought that I would update you. As I said before I sent emails to the EFA and the HOPE mentoring program. NOTHING.
So, then I started calling. I finally got a call back yesterday from the HOPE program. But, the women didn't know how to help me, and is looking for more information Was suppose to call me back today, we will have to see.
There is nothing even close to my area. I live in Portland the biggest city in Maine, and there is nothing here or even close to here.
I have yet to find anybody in Boston, that is an 1 1/2 hour drive for me.
Elisa

[Elisa]

got my phone call today, well she left a message. I was told that I can't be a hope mentor, because of the way the program is set up. I would need somebody to be under, and there ain't nobody here.
I went to Lunch with a friend today, that runs a teen center and is great at writing grants.
I asked her if she would help me write a grant so that I might at least start something in this area.
Next time I go to my neurologist I'm going to ask her.

[Bernard]

Thanks for the update Elisa. It takes some dedication to start something like this. Kudos to you for pursuing it!

Diane, did you set up your awareness session on your own or did you seek out assistance in structuring it?

[Dianne]

Thanks for the update Elisa. It takes some dedication to start something like this. Kudos to you for pursuing it!

Diane, did you set up your awareness session on your own or did you seek out assistance in structuring it?

Hello Bernard

I work in medicine as a trainer, so I'm well used to presenting medical information in a non-scarey way. I checked out everything I was going to say on EpilepsyAction which is a very good informative website for us in the UK. Produced a factsheet. Then presented the information to an audience that are just interested in dispelling the fear and helping my son in the event of a seizure

Dianne

[RobinN]

Here is some very good news:

Three hundred fifth-graders in Hasbrouck Heights and Westwood spent a 45-minute class period last year learning what epilepsy is and what to do if they see someone having a seizure.

Waiters in numerous New York restaurants are receiving training in first aid for epileptic seizures.

Customers at 25 Kings Supermarkets around North Jersey will be exposed to a head-injury prevention campaign over the next month, featuring a chance to win a safety helmet.

And one week last year, New York City transit workers received epilepsy education information in their pay envelopes.

The driving force behind all those efforts is the Anita Kaufmann Foundation in Teaneck.

"We're the only foundation in the world dedicated to educating the public about epilepsy and seizures," said Debra Josephs, the group's executive director.

http://www.northjersey.com/news/nort.../28041764.html
http://www.akfus.org/

[haird18]

Here in West Texas I was watching the news one evening and they were talking about a group of kids doing a similiar project! These kids instea educated all the people that there is nothing wrong with kids with epilepsy. And this is in one small town, and they didnt give up until everyone understood about seizures in Alpine, Tx which is close to me!
David