Epilepsy Foundation

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Speak Up Minnesota!

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

Website: http://www.efmn.org
Location: The State of Minnesota
Members: 50
Latest Activity: Mar 10, 2013

Welcome to Minnesota

Greetings Speak Up Minnesota members! We at the Epilepsy Foundation of Minnesota hope to use this site, frequently, to connect members throughout the state of Minnesota and eastern North Dakota. I encourage you to contact me and interact with each other! Invite your friends, family, community members to join in on our mission:
The Epilepsy Foundation of Minnesota will ensure that people with seizures are able to participate in all life experiences; and will prevent, control and cure epilepsy through services, education, advocacy and research!

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Comment by James Rogers on March 15, 2010 at 5:47pm
trying to figure out how to go about looking for a seizure alert dog since I'm tryin to get into an apartment of my own but the seizure's still are happening so if anyone knows and they could let me know it would be much appreciated
Comment by Stephanie Kolari on March 11, 2010 at 10:42am
Hey Everyone in Congressional District #5: Your fellow Advocate has set up an appointment to meet with Keith Ellison's office on TUESDAY, MARCH 16, 2010 at 1 PM. Keith Ellison's office is located at: Minneapolis Office 2100 Plymouth Avenue N Minneapolis, MN 55411. Please come to the meeting if you can!

Thank you!

Stephanie
Comment by Deb K on January 21, 2010 at 6:23pm
I had my first seizure at age 47 and my second at age 49. It is nearly 4 years since the second seizure. My family, and to a certain extend my employer were good about helping me, but it was hard not to be able to drive. I felt like it perpetuated the stigma of epilepsy. I felt that it gave me another kick in the teeth when I was feeling pretty low already.

While I was unable to drive I read a lot on the internet. It seems that 2 months is as good a predictor as any other time frame. I also read that the major medical reason for car accidents is heart attacks. I'm not sure how accurate that is, or if that is adjusted for the amount of people with heart disease vs the amount of people with epilepsy, but I don't know if people who have had heart attacks are kept from driving for 6 months.

I'd like to see the change. Contact me if I can help.
Comment by Sylvia Nelson on January 21, 2010 at 5:06pm
Hi, my name is Sylvia and I live in Golden Valley, MN (west metro). About March first I'll have been seizure-free for 6 months and am proceeding on 2-drug therapy. Losing my driving priveleges interferes with my independence which means a lot to me. I live alone, but can walk to church. From Oct 2007 to Sept. 30 2008 I didn't trust myself to drive.

I developed a transportation system that handled most everything I needed.
Except for public MetroTransit, there were two private bus services; 1) Prism Express and 2) 5-City Transportation. I was eligible for MetroMobility.

I walked to church (right next door), and was able to work with church members who volunteered to give rides. Family and friends also helped out for urgent needs.

I take the view that 6 months is not too long to wait for driving privileges to be restored after a seizure. I have tonic clonics without an aura. I could cause a fatal crash for myself and someone else. Even if the law changes to 3 months, there will be benefits for those who desire the change.

I take myself off the road after a seizure, continue to carry insurance and keep up license tabs. Getting permission from my doctor when those forms come in the mail makes me feel secure. It is a positive force in my life.
Comment by MountainGirl on December 27, 2009 at 10:32pm
I want to start a support group in Minnesota near Hastings. Has anyone ever started one? How do I go about doing it? It seems like a big task!
Comment by Kelsie Johnson on December 11, 2009 at 1:22pm
I'm Speaking Up today in Rochester!! Sharing my story with youth and families!!! Super Excited!!!
Comment by cheryl on November 22, 2009 at 9:45am
We All need to help One Another Let Go of our Fears and Let God Guide us!
Love One Another.....We need to help the Doctors and hospitals , local and state government understand by getting more information to the Communities exspecially for those who are home bound and have no support..
Comment by Stephanie Kolari on November 5, 2009 at 11:08am
Welcome Kelsie! We are excited to have you on board! We are gearing up to start TALKING ABOUT our public policy agenda for 2010 so stay tuned everyone! We are going for the EDPA Legislation and want to make sure everyone knows this inside and out in order to ACT and CONNECT with your Minnesota State Legislators in February. Speaking of February: SAVE THE DATE: Tenative date for Epilepsy Awareness Day at the Capitol, Tuesday, February 23, 2010. More details to come.
Comment by Kelsie Johnson on October 30, 2009 at 8:34pm
Hi, my name is Kelsie and I've had epilepsy for 2 years. I am so excited that I get to be on the Youth Advisory Council for the Epilepsy Foundation of Minnesota!!!!!!!!!!!
Comment by Stephanie Kolari on September 2, 2009 at 4:08pm
We were INVITED to attend a TOWN HALL meeting for US Representative Tim Waltz in Federal District 1! Please attend if you live in or around Rochester, Minnesota. The meeting will be held on:

Saturday, September 12, 2009 at 12:00 PM.

The meeting will be located at John Marshall High School Auditorium. Again, please come if you live in Federal District 1. OR if you know someone who lives in Federal District 1, please let them know of this important event to advocate on behalf of self, family and friends affected by seizures in Minnesota!
 

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