Epilepsy Advocates Promise to Make a Difference
Epilepsy advocates come in many different varieties. They can be those of us who live with Epilepsy, family members or good friends of those with Epilepsy, doctors and others in the medical field who deal each day with Epilepsy…or simply people who understand this complex world, and care.
I met Susan Noble online several months ago. She is an epilepsy advocate. Can she be classified in any of these advocacy categories? Perhaps, maybe in several, but I think her strongest characteristic is the fact that she is determined to make a difference when it comes to Epilepsy and those touched by it.
Susan lives in Florida and I had the chance to speak with her a few days ago.
“I wanted to do something to make a difference. I’m just that type of person,” she began when I asked her why she is so involved in the Epilepsy world. “I’ve been blessed my whole life. And, when you have someone in your family or in your group of friends who is affected by Epilepsy, you must get involved.” Susan has a family-member with Epilepsy.
Susan has partnered with two other women, Amy Lunn Mosser and Katie Hughes-Schroeder, to create a non-profit organization, The Fighting Epilepsy Foundation. The organization will be based in Chicago. She said the majority of funds raised will go towards research…and technology. The non-profit filings are pending, and Susan said she and her partners are beginning to schedule events and fund-raisers.
“We are three ladies, two of whom have kids with Epilepsy and I think this is our mission,” she said. She is committed to making her foundation unique and to cater to both children and adults. “We all seem to want the same thing. We will focus on research, support and finding a cure.” Susan said her foundation will also work to help parents of children with Epilepsy find the proper monitoring equipment. She has a particular focus on SUDEP and other conditions or situations related to Epilepsy. “I know someone who is terrified to let her two your children sleep alone at night. She is so petrified of SUDEP, she sleeps each night with her kids at her side.”
She wants to educate people, promoting support groups and connecting those who have Epilepsy. “I don’t want to fail, and I know there are many other organizations out there with similar goals and people behind them who are so determined to make a difference,” she said. “I’m hoping that someday, we can all be partners in advocacy, support and research. After all, isn’t that what Epilepsy needs?”
The organization has several events already on the books:
-September 2010: A launch reception for the Fighting Epilepsy Foundation in Texas
-October 2010: A launch party in the Chicago area for The Fighting Epilepsy Foundation
-October 2010: A 5K run/walk in the Chicago area to raise funds
-November 2010: A Texas Hold-em event in the Chicago area to raise funds
-April 2011: A walk to raise funds in Lincoln, NE
More information on these events will be available soon.
You can reach Susan Noble through Facebook. Click here to learn more about The Fighting Epilepsy Foundation.
Susan Noble, The Fighting Epilepsy Foundation
- Katie Hughes-Schroeder, The Fighting Epilepsy Foundation
- Amy Lunn Mosser, The Fighting Epilepsy Foundation
7 Responses to “Epilepsy Advocates Promise to Make a Difference”
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Personal Care 101
July 19th, 2010 at 7:15 am
Epilepsy Advocates Promise to Make a Difference-…
I found your entry interesting do I’ve added a Trackback to it on my weblog
…
ken Abuom
July 24th, 2010 at 4:24 pm
I have read about epilepsy in this link and its very, very interesting topic, i have had a very dificult time talking about epilepsy, because most of the people cannot talk freely about it, we had an awareness campaign in migori on 17th july 2010 most of the people who attended could not open up and even those who’s children had epilepsy feared coming with them to the venue of the meeting for reasons not understandable to me, and they could ask questions saying that its a neighbour’s child who has epilepsy not theirs, mostly they feared descrimination in the community, and when i stood up to adress the meeting everybody could not believe when i talk about my condition openly and freely as i was smiling while talking most of them kept their head down in disbelief, i can say that this land of Africa is the place with the biggest misconception about epilesy,but i hope to succeed and have more people open up because i always believe that the best support is self support.
Kris Cole
July 31st, 2010 at 11:37 pm
Hi All,
I have had epilepsy since I was seven, after a nasty fall caused brain damage. I am now 48 and I freely talk about it. always say ” I don’t have a problem with epilepsy, but other people sure do.” I look at it this way: I have Epilepsy, but it doesn’t have me. I understand how hard it is for young kids to have it and talk about it, other kids are cruel and taunt. But, as an adult, the times I had others make fun of me have served to make me more empathetic and one who speaks out well about Epilepsy. If people were just more educated about what it is, I think the stigma would be greatly reduced. I explain it to people in terms they can “get.” I use the analogy of a spring that got wound up tight, and had no release button, that is what happens in the brain of a person with epilepsy, and the seizure is just a way for the brain to release the energy all brains have. Most people don’t know that their own brains are a mass of electrical impulses governed well. That is the only difference between someone with epilepsy and someone without it, just a matter of the brains ability to handle the “current” we all have. Anyways, I wanted to say thanks for the site, and encourage all who have epilepsy to not feel badly about themselves but be proud of their abilities to thrive in the face of a disorder that can be difficult to mange and live with. You all rock and are very brave. Don’t let epilepsy own you, YOU own epilepsy! I am living proof it can be done!
Alysse
August 1st, 2010 at 7:59 am
Kris,
SO great for you! Thanks for sharing…
I think all of us must do our part to bring epilepsy out of the shadows!
All the very best,
Alysse M.
Susan Noble
August 3rd, 2010 at 9:59 am
Kris, Thanks for sharing your story! I am the Executive Director of the Fighting Epilepsy Foundation and I appreciate your advocacy in talking about it we need to do so much more of that and erase the fear and stigma that others have towards those with Epilepsy and bring it out of the Shadows and make it something that everyone talks about to help those that live in hiding because they feel they can’t let anyone know. You Rock TOO!!!
Angelia
August 4th, 2010 at 9:53 am
My mother had the same thing happen to her about 12 years ago. It started with her maybe having a stiff neck and then snowballed after that, she was found by a coworker in a semi coma and then rushed to the hospital and slipped into a coma. The dr. wasn’t sure at frist and then the worse news came she had Meningitis and her life is in the Lords Hands and so for 1o days we waited and talked to the drs. It was a very long 10 days with a frever of 106 and antibioitcs in ICU, we waited and then our prayers was answered. She wake up and knew all of us!!! But again it was clear she wasn’t the same mother, wife, grandmother or friend that we had known and still to this day don’t know in some ways. At that time she thought “everything was prefect” although while she was in the coma she had a near death experience where she saw Jesus at the Jordan with her parents on the other side waiting. But it wasn’t time to cross and she therefor she thought that everything was prefect in the world. But when she realized the best she could that it wasn’t. She had to start life over again by learing everything again from eating to driving over to spand of 3 years. Ofcourse still today there is damage to the brain the evidence is short term memory and the Epilepsy and I know that this is the worse one for me she wasn’t the moma that I had before. Ofcourse we’ve had alot of days since then and she is a miracle to be alive! We have been through Breast Cancer too since then.
Action Amos
January 30th, 2011 at 10:06 am
I am the ED of Epilepsy Movers in MALAWi I would like to get in touch with you.