We at the Epilepsy Foundation of Michigan are proud to announce our 60th Anniversary celebration. Since 1948, we have fought for and battled on behalf of those with epilepsy, and our success in that never-ending battle is directly linked to the support and participation we receive from generous people from all around the country.

As the Foundation enters its seventh decade of empowering those with epilepsy to live productive lives, we often reflect on the countless moments that have shaped our history — a history that oftentimes includes being the primary source of information and support to those with epilepsy and their families.

As part of our 60th anniversary celebration, we asked you to share your story about battling and overcoming epilespy. We thank those who took the time to tell the story, and below we have examples of some of the more touching accounts.

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"I felt epilepsy was taking away Melanie's happiness; the Epilepsy Foundation of Michigan helped give it back."

Melanie started having seizures at 7 years old; they came from no where. It took me by surprise because when they started I didn’t know what was going on. I didn’t know anything. So my desire to find out what was going on took me on a long journey. I said, “What can I do to understand what’s going on with her?” I was determined to make the playing field equal for Melanie. It became my life. I was searching the internet one day and that’s when I found the Epilepsy Foundation of Michigan Web site. They listed their Comprehensive Epilepsy Centers and I chose the one at U-M.

 

I took Melanie there and I stayed in contact with the Foundation along the way to keep them updated on Melanie’s progress. She had surgery three years ago on Labor Day and she’s doing fine now. With the help of the Epilepsy Foundation of Michigan, we started a support group in Lansing. I make sure to tell the parents who attend our support group to be sure to contact the Foundation if they have questions. There’s just so much available to them at the Foundation.

 

The Epilepsy Foundation of Michigan is like family to me. They became a support system and they gave me more knowledge and insight about seizure disorders than anybody. They connected me to other parents and other people who are dealing with epilepsy. I felt epilepsy was taking away Melanie’s happiness; the Epilepsy Foundation of Michigan helped give it back.

 

 

"The needs of patients with epilepsy are great, and the Foundation has a very important job for the next 60 years."

 

I was introduced to the Epilepsy Foundation of Michigan in 1968 when it was the Epilepsy Center of Michigan. I was a neurology resident at Detroit Osteopathic Hospital and the Foundation funded me to go to the first International Epilepsy Conference in Colorado Springs. In 1972, my associate Lou Rentz encouraged me to join the Center’s board of directors, and I later became part of the Professional Advisory Committee.

 

I’ve always tried to utilize the resources of the Foundation to help patients who have both educational and social needs because of the many services the Foundation has to offer; I also use the Foundation as a resource for people newly diagnosed with epilepsy.

 

The Foundation has made my professional work much easier because I felt very confident that patients I referred to the Foundation would get the kind of information they required, but also would find that they had an advocate and an entity that they could refer to. I would say to my patients, “This is a resource for you to take advantage of.” It’s essential that a physician have at his/her disposal good resources—agencies they can refer to that would maximize patient care.

 

The past 60 years have been a good foundation for the Epilepsy Foundation of Michigan. The needs of patients with epilepsy are still great, and the Foundation has a very important job for the next 60 years. Epilepsy is not going to go away; the problems associated with epilepsy are not going to disappear. The importance of the Epilepsy Foundation of Michigan will always remain; to lose the Foundation would be a serious problem for patients with epilepsy in Michigan.

 

 

 

"I cannot imagine where I would be without the help I received from the Epilepsy Foundation of Michigan."

I was first diagnosed with epilepsy in January of 1992. My seizures were mixed and my mom was confused and really scared by them. A nurse in Kalamazoo suggested that mom call the Epilepsy Foundation of Michigan. We got a lot of great help from them, and my mom kept saying, “Here are people who actually know what’s going on and understand.”

 

The Epilepsy Foundation of Michigan has been such a life saver for me, and I love them. They have done lots of things for me. I went to Camp Discovery and I was fortunate enough to be named Winning Kid of Michigan and of the nation. That was a lot of fun. My parents and I visited the White House and spoke with Hillary Clinton. We also visited congressmen and congresswomen from Michigan and encouraged them to vote for more funding for epilepsy. Through the Foundation, I learned that I am not an epileptic—there is no such thing. I am a person who has blue eyes, blond hair, who loves music, dance, art, reading, swimming and lots of other things. And I have epilepsy. It does not have me.

 

I cannot imagine where I would be without the help I received from the Epilepsy Foundation of Michigan. And I can’t begin to imagine the number of people the Foundation has helped over the past 60 years. They certainly helped me.

 

 

 

"The Epilepsy Foundation of Michigan is...a responsible, successful, active and helpful organization that has brought information and services to people."

I was introduced to the Epilepsy Foundation of Michigan in 1984 after I had invited a speaker from the Foundation to speak to my group. I was a special ed. administrator and I had a parent group which consisted of parents whose kids had disabilities. There were some parents who had kids with epilepsy, and no one knew much about it or talked about it much at that time. So I felt it was necessary to have someone come and speak to us about seizure disorders.

 

Soon after that, I was asked to serve on the board. I thought it would be a great thing, since some kids in my group had epilepsy, and I felt having access to information could help them. My daughter was diagnosed with epilepsy after suffering a head injury from a car accident; she lost her teaching career as a result. I was happy to serve on the board because I was grateful for the care she had gotten through the epilepsy centers.

 

We worked hard to renew the focus of the Foundation; we knew that education (about the condition) was needed. We made the decision to join the national Epilepsy Foundation of America; that was a good thing. It gave us a new identity about who we were, where we were going and what we were supposed to do.

 

The fact that the Epilepsy Foundation of Michigan is celebrating its 60th anniversary is significant. It tells us that it’s a responsible, successful, active and helpful organization that has brought information and services to people who might otherwise never had been able to get it.

 

 

 

"The Foundation allowed me to gain confidence in myself and actually helped me want to be a better person."

My mom told me about the Epilepsy Foundation of Michigan when I was about 8 years old. She said, “They want you to write an essay about how you feel about having epilepsy.” I said okay, and I wrote the essay, sent it in and a couple weeks later I got a call about being a Winning Kid. From then on, it took off. I spoke at banquets and things like that. I did a lot of things with the Foundation and it was really fun. I’m now looking forward to working with them again because they were a big influence in my life. The Foundation allowed me to gain confidence in myself and actually helped me want to be a better person. They also allowed me to become an advocate and stand out and do better for myself, because I never really thought it was possible until I got involved with the Epilepsy Foundation of Michigan.

 

The Epilepsy Foundation of Michigan is wonderful. They’ve been out there for 60 years, giving knowledge to the community about epilepsy. That knowledge has helped people to not be afraid of epilepsy, and (the Epilepsy Foundation of Michigan’s) involvement has also helped the community to understand the condition instead of being afraid of it.

 

 

 

"The Epilepsy Foundation of Michigan has... done so much for so many people."

I was introduced to the Epilepsy Foundation of Michigan by a very good friend of mine who had been on the board. His term was about to expire and he decided that he was going to move on to retirement. Bill Martin was his name, and he convinced me that I should become active on the board. I agreed and the rest, as they say, is history.

 

Being involved with the Foundation gave me insight into epilepsy. My entire working life has been spent in nonprofit organizations, and what I liked most about being on the board was that it gave me a great deal of satisfaction. I found it to be very gratifying helping people who otherwise may not have the opportunity to be all they can be. The Foundation, with its role as an advocate for those with epilepsy, gives people the opportunity to spread their wings and give them confidence.

 

It’s remarkable that the Epilepsy Foundation of Michigan has been around for 60 years. They’ve done so much for so many people, and this wonderful accomplishment should be acknowledged and celebrated.

 

 

 

"The Foundation has... endured because of the quality of service it offers those with epilepsy."

I was fresh out of school and looking for a job when I answered an obscure ad in the newspaper back in 1972. Two weeks later, I got a letter in the mail from what was then known as the Epilepsy Center of Michigan thanking me for my interest in the job. I went in for an interview and I was hired (as a psychologist).

 

I left in 2002, but during my time there, we accomplished a lot. In 1975 we took over Children’s Hospital’s pediatric clinic. It became a very big clinic and we got a lot of referrals and we were able to help a lot of kids. For me, it was nice because I worked not just in helping them cope with their epilepsy, but I worked with them educationally as well. The pediatric clinic was something I really felt close to.

 

The Foundation’s 60th anniversary is amazing to me. When I started in October of 1972, they were planning the celebration of their 25th anniversary and I thought that was a pretty cool thing. I was very young, very new and I thought, “Wow, imagine an organization having a quarter century of service.” At that time, I never would have expected to still be hanging around for the 60th, but this milestone is certainly a tribute to the dedication of the people who have been involved. Those who I’ve had the pleasure of working with have always had a tremendous commitment to the cause. The Foundation has changed over the years, it’s evolved, but it has endured because of the quality of service it offers those with epilepsy.

 

 

 

"There's no place in the state of Michigan that really helps people (with epilepsy) as much as the Epilepsy Foundation of Michigan."

I met (former Epilepsy Foundation of Michigan President) Howard Shapiro while on the board of the United Way of Michigan, and he asked if I would consider joining the board of the Epilepsy Foundation of Michigan. I accepted. I was very involved with the Foundation; for many years I was the major liaison with the United Way, which back then was our major source of funding. I took that role very seriously.

 

What I just love about the Foundation is whenever I had a friend, a client or customer who had a child with epilepsy, I knew I could call (the Foundation) and they would give that person first-rate assistance. I did that many, many times; I think people don’t realize, unfortunately, how common epilepsy occurs in the population.

 

There’s no place in the state of Michigan that really helps people (with epilepsy) as much as the Epilepsy Foundation of Michigan. Doctors, hospitals….they’ll treat the patient, but in terms of caring for the total needs of the patient, the Foundation does a great job.

 

It’s a first-rate organization, and (Epilepsy Foundation of Michigan President) Arlene (Gorelick) always wins awards as the outstanding nonprofit CEO. The Foundation has been and continues to be one of the finest nonprofit assets in the state—especially Southeast Michigan. I have been involved with probably 100 nonprofits over the years and I’ve never seen one so professional. It’s first-rate, and I commend them on their 60th anniversary.

 

"My heart goes out to all who may be faced with the physical, emotional, psychological and spiritual drain from losing a child."

"I am in control of my future and have so much more to experience."

JEFFREY WILSON Saginaw   I lost my beautiful 19 year old daughter, Generose, from a seizure on June 22, 2007. The memory of Gen will always be with me. Gen had been having grand mal seizures since she was about 16, although we now suspect she was having seizures before then. Her friends revealed to us that every once in a while they noticed Gen’s eyes would roll up and lock for a few seconds—once while she was driving. Her first big seizure happened at a hockey game and that was the first of about 6 trips by an ambulance to the emergency room over the next 2 years or so.   Gen had seizures at school, at a restaurant, at her dorm room in college and at home a few times. These are the ones we know about; there’s no telling if she had them during the night in bed or at other places. We suspect she had one in the bathroom at work, after a prom dance, and once in a car while waiting for her brother to get a sport’s physical.   My wife and I flew to Washington, D.C. for the National Walk for Epilepsy; it was very emotional but uplifting. In death, Gen continues to give; from donated tissue for research, corneas for sight to two individuals; even clothes and flowers to the less fortunate. My heart goes out to all who may be faced with the physical, emotional, psychological, and spiritual drain from losing a child. I had to tell Gen’s story; that’s how she would have done it.

BRIAN ARNDT Macomb   My name is Brian Arndt. I have had seizures since I was a year old. I am now 18. It is not easy having epilepsy, especially when it is not controlled. My seizures happen when I am worried, excited, tired and then sometimes for no reason at all. I follow a modified form of the Ketogenic diet, which helps me. My seizures are hereditary, from a gene in my body.   I have volunteered at Mt. Clemens General Hospital and now I am at Tweddle Group. I really like it there because I have opened people up to what epilepsy is and they have taken the time to learn what to do if I have a seizure and not treat me differently because of it. When I participate in physical activities I wear a helmet. There will always be people who treat you differently and tease or make fun of you for all kinds of reasons not just Epilepsy but I care more about protecting myself than I do about being teased. I really like who I am and I try very hard to be considerate to others and set a good example.   My parents have been really good about letting me try different sports. I have heard other parents say they would not let me out of the house without wrapping me up in bubble wrap if they had me. I am just like any other teen and want to do some of the same things other teens think about doing. The Foundation’s saying is “Not another moment lost to seizures;” my saying is “Seize your freedom”. I am in control of my future and have so much more to experience and do not plan on letting seizures take over my future or me.