Epilepsy Foundation

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Speak Up Indiana!

This is the home page for epilepsy advocates in Indiana! Join us in our effort to find a cure, stop discrimination and improve access to care and treatment.

Members: 41
Latest Activity: Feb 2

Discussion Forum

Seizure Alert Dogs - Indiana

Started by Sumer R Rusk Oct 22, 2012. 0 Replies

epilepsy foundation of indiana license plate

Started by marc parker. Last reply by Melissa Smith Sep 22, 2012. 2 Replies

New Indiana Group

Started by Melissa Smith Jun 1, 2012. 0 Replies

Comment Wall

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Comment by charles l. brown on July 20, 2012 at 1:23pm

Nothing makes more upset and angry,than those in political power,selfish people and others pretending to care about the plight and pain of those having to live with and struggle against all odds,with disabilities and many whose epilespy have either been a product of their lives or something for which struggles,haven't been easy or enjoyable to deal with.Don't get me wrong,I'm not a negative person with no care or concern for people in general,but I don't like being singled out as being a burden on society or a freak of nature.I believe that people with epilespy and disabilities have enough to deal with,than to be concerned about how others feel about how we go about living our lives,hoping for a brighter day and looking toward a future full of love,joy and compassion for all,regardless of whether any of us has disabilities or not.I understand the need of rules,boundaries and what one can and cannot do without infringing on the rights of people.Put what irks me and gets on my nerves is those in society,profess to care about one thing and when push comes to rear its ugly face,they just turn and run,as if what they were attempting to do and trying to accomplish,just don't matter and is no concern of theirs.I love all people dispite their differences and at what point of life that they currently are a part of or living.Respect works both way and l believe that God put us in the position that we have to be the people he would have us to be,regardless of opinion,concerns or what we think of each of each other.As with the recent changes in MEDICARE/MEDICAID,many who cannot afford to purchase,let alone buy health/medical/dental insurance are put in a position where they will have to find work,seek families for help or look to other ways to pay for the cost of doctor's visits,tests,surgeries,prescriptions and other things having to do with their help and well being.It's incumbent upon society and members of leadership(individuals,city and state leaders and government officials),to step up and make plain,the blight of those who cannot(or at a level will find it difficult),or could affort for do so.So this current legislation,asking for all people to have insurance(medicare/medicaid included is not only will hunt many who can't afford it,but will place a burden on themselves and their families which would have to take the cost or bulk of the expense of care and subject themselves to that which may cause pain to them.So bring those in leadership to do what is necessary to make it happen!! Let's have and make a serious effort to see that something is done,to make others to realize that there are other ways to cut costs and make it possible for anyone to receive and afford any and all services,medical and otherwise,to any and all who desire it and find it a neccessity for their everyday living,care and for some survival and sanity.

 

 

Comment by marc parker on December 15, 2011 at 8:07am

I am writing to inform you of a way to support the Epilepsy Foundationof Indiana. Currently, there is not a specialty plate in our State supporting Indiana residents having seizure conditions. This can change with your help!

 


By agreeing to purchase an Epilepsy Foundation of Indiana license plate, you promote the Foundation which is here to help those with seizures.

We need your assistance to make this happen. Indiana requires we have 600 individuals agree to purchase an EFI plate. We are asking you pay ten extra dollars (above required BMV fees) when you renew your plate. This amount of money goes back to EFI to further develop programs and events for all of us.

We can reach this goal with all of your help.  Would you be willing to ask your family members, friends, associates, school staff, pediatric clinics, and anyone else you know to sign up for an EFI plate? Maybe you have more than one car to register?  At a minimum 600 commitments would bring in $6,000! I firmly believe we can all help far exceed that number.

If you are an artistically inclined person, please contact me. I really want us to create a beautiful plate bringing attention and awareness to those with seizures.  Our website address will be on the plate. This will be able to be seen by countless drivers throughout Indiana. Maybe someone sitting at a light will write the information down and give it to someone with seizures?

Here is what we need:
 * send me an email with your name and address. If more than one person in your home is registering a car,  we will need the name of each person committing to purchase a plate. That's all. It's just that simple!!!!!

I will keep you updated on where we stand as we proceed.  Please support our effort to increase awareness and compassion for those with seizures in our state. We need to have 600 names submitted by March 15, 2012. Thank you for your help!

Warmest regards,

Marc Parker
EFI "Speak Up, Speak Out" Director
fused2often-efispeakspeakout@yahoo.com

Comment by Holly P. on April 9, 2011 at 3:47pm

Please make families aware, as appropriate, of the following changes to the Developmental Medicaid Waivers in Indiana, which impact those on the waiting list for the DD, Autism and Support Services
waivers.

This information was shared in the recent ASK newsletter. If further clarification from DDRS is received, we will share that with you.

from ASK:

If a family signs their child up for the Medicaid waivers before the age
of 6 years old, the Bureau of Developmental Disabilities (BDDS) will no
longer do a medical evaluation to determine if the child has a disability
until the year the child turns 6 yrs old. It is up to the family to contact
their BDDS location within 1 year of the child turning 6 years old (before
they turn 7) to request an evaluation be done. The family will not be
notified by BDDS to do this. If the family does not contact BDDS for this
evaluation within that one year time frame, their application for waiver
services will automatically be removed from the waiting list. The family
will not be notified if they miss the deadline and they are removed from the
waiting list.

Reminder: Families should check with BDDS *every year* to ensure their
child’s name is still on the waiting list. Put a reminder in your calendar
and make this call annually.

from Family Voices:

You can find the BDDS phone numbers here:

http://www.in. gov/fssa/ files/BDDS. pdf

An effective date was not mentioned, so if your child is over age 6 and a
DDP (disability determination profile interview) has not been done yet, call
ASAP

Comment by Holly P. on April 9, 2011 at 3:42pm

Just an FYI that the Daylilly Fundraiser is now an event listed on the EFI Organization page on Facebook.  This will make it easy to start spreading the word about the sale much farther and wider.  If you are on Facebook, consider sharing the event with your friends and family to increase sales and thus the success of this event for EFI.  Help us grow epilepsy awareness, One Daylilly at  a Time!  With this funds from this sale, EFI can do more to support families in our state that are living with epilepsy.  And that, my friends, is a GOOD thing. 

Click this link below to go to the Facebook event page for the sale.

Daylilly Fundraiser on Facebook

 

Cheers,

Holly

Comment by marc parker on April 9, 2011 at 2:59pm

jennie,

welcome, and thank you for your comments.  the purpose of this site is do just that, provide information, discuss issues related to epilepsy, etc. everyone can do it from their home ( no gas at today's prices) and when they have time to join in. please spread the word!  where in the state are you located?

marc

Comment by SUNFLOWER on April 7, 2011 at 9:13pm

Hello everyone. I've joined this group and have enjoyed reading everyone's comments. It's nice to know that my daughter and I are no longer alone with epilepsy. Thanks Carol for the daylilies website, I'll check it out.

I have contacted Stephanie and left a message regarding more support groups in Indiana, especially for my daughter's type of epilepsy (LGS).

Comment by Carol Carmella on April 7, 2011 at 11:51am

Hi Everyone~ Springtime brings the thought of flowers and flower gardens. The Indiana Epilepsy Foundation is doing a unique fundraiser. They are taking orders for Daylilies. Here is a picture of Daylilies. The order will consist of an assortment. Check out the website. They can be shipped all over the United States. This is a great way to help a great cause and get something in return. Enjoy your spring. Website: http://www.indianaepilepsyfoundation.org/NEWS.html    

Daylily
Comment by marc parker on March 15, 2011 at 8:16pm

david,

i think it is wonderful that you are willing to provide education.  this will be critical for the administrators, teachers, and students.  this is one of the goals that is being addressed through the EFA.  once i know more about this program, and i can provide greater details i would be happy to do so.  stephanie should prove to be a great resource to you in this area.

marc

Comment by David Kuhn on March 14, 2011 at 9:35pm

Marc,

Thanks for the suggestion of calling Stephanie Williams.  I should have looked through the EFI website for a person who holds this type of position. 

The mother and daughter live in Vincennes.  The mom saw me on News Channel 10 this morning, talking about brain injury and epilepsy.  Her daughter's classmates have wanted to do something like this for sometime now, but didn't know how to organize it, who to call for assistance, or how to ensure that everyone knew what the walk was for.

Thanks again for the suggestion and if there is anything you need assistance with, in the Wabash Valley area, e-mail me or call me.  I'll be glad to help.

 

David Kuhn

Comment by marc parker on March 14, 2011 at 6:18pm
david, have you reached out to the EFI director of organization development?  her name is stephanie williams?  her phone number is 317-490-6035.  i think she would be a great resource in this area.  marc parker
 

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