And the Winner is…

And the Winner is…

Each year the Epilepsy Association recognizes a client that has made significant progress in their goals related to their epilepsy and mental health.   Selecting the client of the year is a difficult process as we are so proud of all of the individuals that we serve.  This year Julia Clouden- Jones was selected as the Epilepsy Association’s Client of the Year.  

Think back and reflect on your own life.  What have you accomplished in the last 19 months? Did you lose that 15 pounds? Get a new job? Clean out that closet that has been collecting all of the odds and ends in your home?   

In the last 19 months there have been 2 holiday seasons, 2 spring break weeks, 1 tax season, and of course who could forget , 1 NBA Championship win! 

The last 19 months for Julia have been quite the adventure. When Julia came to the Epilepsy Association she was homeless, in an unhealthy relationship, had uncontrolled seizures that were epileptic as well as non-epileptic, did not have health insurance, and was desperate for help.  She wanted to stand on her own two feet, and needed some help.  Julia was eager to begin services and once she did she moved along so quickly.  Throughout her time as a client in the Adult Case Management Program Julia was able to completely turn her life around.  

In the last 19 months Julia was able to:

  • End her relationship and move forward
  • obtain and maintain health insurance
  • obtain and maintain disability benefits
  • engage in counseling
  • obtain and maintain her own apartment
  • engage with a neurologist who informed her that she was candidate for epilepsy surgery
  • had a successful epilepsy surgery which significantly reduced the frequency and severity of her seizures 
  • Due to her counseling and other positive  changes in her life her non-epileptic events  are no longer occurring
  • increase her self esteem
  • improve relationships with family members

Julia is a true inspiration! On June 16th, 2016 Julia was awarded the 2016 Client of the Year Award.  She humbly accepted her award and spoke at the Annual Meeting about the impact that the Epilepsy Association has had on her life.   Tears filled the eyes of the audience members as they witnessed this amazing example of strength and perseverance.  

Julia continues to surpass all of her goals and sets new ones for herself. We look forward to seeing where her journey takes her as we know it will be a beautiful ride.

Congratulations Julia!

Amazing Kid Alert!

Amazing Kid Alert!

As a 5th grader in the Hudson School District, Camden Frank was assigned to do a Passion Project.  Camden selected to use epilepsy for his topic as he has a family friend recently diagnosed and has seen how fear of the unknown and fear of the future took over this family.  Camden went above and beyond his assignment by preparing a 24 minute documentary on epilepsy.  He included information about seizure types, diagnosis, medications, and seizure first aid.  Camden used his entire 5th grade school year to produce this documentary.  He conducted interviews with epilepsy professionals as well as individuals living with epilepsy.  He did this all on his own while his mother filmed the interviews and drove him to where he needed to be.  It took Camden 3 attempts to make his documentary before finally being satisfied with the product.  His first was created on his iPod Touch and it was 5 minutes long.  He felt that it did not show the full picture of epilepsy.  The second was completed on his laptop and was ten minutes long.  He was still dissatisfied and did not feel that enough was presented in that time to help others understand the significance of epilepsy.  His final version was presented to the Epilepsy Association staff on June 16th.  EA staff were moved and in awe of his project and the kind and talented person that is Camden.  He was supported that day by his mother and sister and you could see the pride radiating from them.

Camden and his sisters had a lemonade stand in their neighborhood and raised $100 for the Epilepsy Association. Camden presented this check to Kelley Needham, CEO of the Epilepsy Association following his video presentation.  Camden and his sisters are planning on having 2 more fundraising lemonade stands for the Epilepsy Association. 

Camden is one in a million.  He truly is an amazing kid as he so generously spreads epilepsy awareness and education.  He is a true role model for children of all ages and we are honored to share the same passion for epilepsy and epilepsy awareness. 

Congratulations Camden on a job well done!

“A person’s a person, no matter how small.” -Dr. Seuss

Children CAN make a difference! Take Ryan Wood for example.  At 4 years old he is preparing for kindergarten, looking forward to summer T-Ball,  and enjoying being a big brother.  He is also making positive change for other children.  Ryan participated in the 2016 Winter Walk in which he rode his scooter the entire course at Strongsville Mall.  When asked why he did this he reported, “I want to help other kids. There are kids that have epilepsy that can’t be here for all the fun”.  Ryan spent several weeks campaigning by making phone calls to family and friends as well as posting a series of videos on Facebook to talk about epilepsy and how important it is to help others.  His videos were shared on many different Facebook pages and he received donations from several different states!  Every day after preschool he would ask to view his website to see who donated.  He then would call and thank them.   Ryan’s success was so much more than he and his family could have imagined!  He raised $825 for the Epilepsy Association which made him to top fundraiser for his age group.  Ryan attended  the

Purple Day Power Lunch at the Epilepsy Association in which he received an award for his efforts.  He was permitted time at preschool to share his award with the classes and talk about epilepsy and helping others.  Ryan’s preschool, St. Augustine Manor Child Enrichment Center, also hosts a Purple Day event in which the children learn about epilepsy through an in-service or puppet show, wear purple, and create purple projects.  The children created a poster this year that currently hangs for all visitors to the Epilepsy Association to see.

Ryan may only be 4 years old, but his efforts raised funds to provide support services to children with epilepsy and their families at no cost to them.

If you would like to learn more about the services that Ryan raised funds for, or helping your child’s school set up an in-service to provide epilepsy education, please call the Epilepsy Association at 216-579-1330.

2016 Featured Family    11th Annual Winter Walk

2016 Featured Family 11th Annual Winter Walk

Tillman Family—Kaycee Tillman
Nominated by: Allison Hamilton, Kaycee’s Aunt

Our story began after Thanksgiving 2014 when we noticed Kaycee did not know the answer to simple questions and just seemed “out of it”. My husband called and said something is wrong with Kaycee, she didn’t know what a brush was when I asked her to bring it to me. This was the second episode in less than a week, and our pediatrician’s office instructed us to take Kaycee to the ER immediately! They ran tests, but everything came back normal. They told us it was probably a virus and to wait it out.  It took time and persistence to figure out she was having absence seizures. After a month filled with hospital visits, doctor appointments and, seizure after seizure, were finally were able to start her on medication. From there, we began adding new medication after medication to the mix hoping one would work!

In March 2015 things took a turn in the wrong direction. Kaycee had a convulsive seizure called tonic clonic seizure. Close to an hour after the seizures started, it finally began to subside and we were in a helicopter on our way to Nationwide Children’s Hospital in Columbus. This was my worst nightmare and the most helpless I’ve ever felt.

Kaycee came through that night and the seizure didn’t dull her shine. Following this change in seizures, she began having different types of seizures several times per day. The atonic seizures would make her fall with no warning at all including down the flight of stairs in our house several different times.  Her little body was covered in bruises from head to toe.

I admitted to myself these were not going away, so I began researching seizures.  I discovered a term I had never heard before “SUDEP” or sudden unexplained death of an epileptic person.  That’s where that pit in my stomach comes from – the fear of her slipping away from me while she’s sleeping. My research put me in contact with a wonderful network of individuals who are supportive and full of information when needed.

Currently, we still have no answers. While the seizures are not as severe, we can count on them showing up most days. We take it all in stride and try to let Kaycee be as independent.

The fact that my baby has to deal with these health issues is horrible, however, this path has put us in contact with wonderful individuals and organizations. Kaycee was granted a trip for our family to attend Epilepsy Awareness Day at Disneyland. It also allowed us to meet wonderful families with common concerns and gain valuable knowledge at the Epilepsy Expo. We met families with children from all over the epilepsy spectrum.

Since the beginning of our story, Kaycee has started kindergarten and is doing well at her school. They care for her and make sure even if she has a seizure she is able to stay at school for the day if possible. They have thought through all aspects of having her at school and continue to adjust and make necessary arrangements. I am so grateful we were lucky enough to start with such a wonderful and caring team.

In August, we began working to get Kaycee a trained seizure dog and through the generosity of so many of our family, friends and strangers we raised enough money. The outpouring of support was wonderful and more than I could have ever anticipated.

I choose to look at the positives and all the good that has come out of this experience. I will continue to be Kaycee’s biggest fan and fight for whatever she needs while continuing to follow Kaycee’s lead of positivity for her future.

We are proud to be one of this years Featured Families and we hope you’ll support, Kaycee, our family and the Epilepsy Association at the 11th Annual Winter Walk for Epilepsy on January 30!


March 26th is Purple Day, Epilepsy Awareness Day

Purple Day is Epilepsy Awareness Day

By: Beth Nuss

When my daughter Taylor was diagnosed with epilepsy I felt like it came out of nowhere. The seizures started subtly and went unnoticed for several months; still we knew something was wrong. Taylor was forgetting her homework, going to bed in her day clothes, and wearing the same outfit two days in a row. None of that would be considered normal behavior for a thirteen-year-old girl. When I spoke to the pediatrician about these occurrences, even she didn’t immediately suspect epilepsy. Even after a battery of tests, including an EEg, her condition couldn’t be labeled as epilepsy because there wasn’t any hard evidence.

 Finally one day we observed a seizure for the first time. I can only describe it as a short period of time where she was unaware of her surroundings followed by lip smacking and picking at her clothes. These seizures became more frequent and more pronounced as time went by. Eventually the evidence made it clear that Taylor had epilepsy. She was treated for the next eight years with many different anti-epileptic drugs, each of them failing after a few months of use, while the seizures became worse and very noticeable. I was fearful that she would get hurt.

 School work became an exhausting chore. Her memory grew increasingly worse as the seizures continued and the mind numbing drugs made her inattentive and tired. The school listened to my concerns and tried to understand but they were not equipped to deal with a child with epilepsy. They had never dealt with it before and were completely unaware when Taylor was seizing in school but I knew it was happening. After seven years of seizing at home sometimes ten to twenty times a week, it’s impossible to think that it never occurred between the hours of 8am and 2pm Monday thru Friday. I would like all teachers to be trained to notice when children in the classroom are behaving strangely, attempt to identify what is happening and report the actions to the child’s parents.

 I feel like there is a general unawareness of what epilepsy is and how it affects patients and their families in our society. Countless times I tried to explain to people who ask, “how’s Taylor doing?”, that the meds aren’t working, she’s still seizing, she has trouble learning, she can’t remember, she’s tired all the time, she doesn’t laugh and smile like she used to, she can’t drive, she can’t swim, etc. etc. etc. It is hard to understand when you don’t live with it daily and have never witnessed a seizure. And that’s one of the reasons I would like to bring more awareness to epilepsy.

 Fortunately Taylor was finally able to have epilepsy surgery and has been seizure free ever since. Her two-year anniversary is coming up on March 26, 2015, on Purple Day. She still takes some medications as a precaution but her activity level, confidence and overall disposition is markedly better. Our family will celebrate Purple Day together at The Harp with the Cleveland Epilepsy Association and we will continue to support the many families in our community struggling to come to terms with the diagnosis of epilepsy and the enormous challenges it brings.









Good People, Good Hearts

Tina has been a client of EA since fall of 2014. Tina’s family struggles significantly with finances and making sure that they have all that they need. Several individuals from Upsher-Smith pharmaceutical company wanted to help someone in need for the holidays. Out of their own pocket they donated money to a pit and reached out to the organizations that they work with for nominations of a client/family in need. Each person took their story to the group and a vote took place. Tina’s family won the vote and her family received a gift of money to help make the holidays special. Tina is newly married and has fourteen-year-old twins, a sixteen-year-old, a twenty-year-old son who is developmentally delayed, and a twenty one-year-old daughter who just got a new job and is finishing her GED. Tina’s agency worker presented this gift to her the week before Christmas and explained who it was from. Tina was so overwhelmed and grateful for this gift because she said that it meant that she could give her whole family the Christmas that she wanted for them that would otherwise be impossible due to her financial situation. Tina’s overwhelming emotion over receiving this gift was so touching, because she is so deserving of it. Tina’s agency worker assisted her in shopping for gifts and food for her family for Christmas and helped her make a list and follow the budget. Tina chose to buy practical gifts for her children since they needed new items like socks and underwear. After the shopping was done, Tina expressed that she wanted to make it a surprise for her family so she and her worker brought everything into her house without the rest of the family and hid the gifts from her children so they would be surprised on Christmas day. Tina’s family woke up on Christmas morning with gifts and a beautiful Christmas dinner all because these few individuals showed the true meaning of Christmas. In Tina’s mind these generous people are “Christmas angels” and will forever be in her heart.

Beyond the Storm


Epilepsy Association 2831 Prospect Avenue Cleveland Ohio

Epilepsy Association
2831 Prospect Avenue
Cleveland Ohio

Anyone who lives with epilepsy understands how stigmatized epilepsy makes people feel.  We ask, where is our national spokespersons or why don’t we see media campaigns about epilepsy?  After all, the prevalence of epilepsy makes this neurological disorder a major public health problem.  Epilepsy is not benign.  As many as 50,000 people a year die prematurely from the consequences of seizures.  That is more than die from breast cancer.

I am at an age where friends frequently share stories about high blood pressure, diabetes, cancer and other illness, but never once have I heard anyone talk about epilepsy in public, even when I know they live with the disorder.  Yet, I have had many experiences where people, once they knew where I work, share quietly that they have epilepsy, as if to say, “I wish I could talk about this.”

Two years ago, the Epilepsy Association in Cleveland decided to help people talk about epilepsy.  With the help of some very generous Clevelanders, we commissioned Katherine Chilcote to paint a mural about the journey of epilepsy.  We then installed her 32 foot by 10 foot work of art on the outside of our building.  We did this to tell the story of epilepsy, generate awareness of the Epilepsy Association and to give persons with epilepsy a place in the community.  We felt art accomplishes these goals.

To conceive of the imagery, Katherine interviewed 34 individuals in Cleveland and Seattle who live with epilepsy, and she conducted one community charrette (a planning dialogue) during the spring of 2014 in Cleveland.  Through this process, Katherine gained insights into the shared experiences of living with epilepsy.  Her mural, “Beyond the Storm” reflects these shared experiences.

The mural’s imagery describes a voyage or journey that moves people beyond the circumstances of their health condition and life’s circumstances.  Katherine was inspired to paint images of birds and tornados as a reflection of the physical experiences of seizures.  Moving beyond these experiences are expressed through a vast horizon in the painting.

Katherine came to understand that living with epilepsy means being prepared to live each day anticipating seizures and overcoming the fear of the obstacles they create. Through this project, she hopes we come to understand that health obstacles give us an opportunity to grow into stronger people.  During the interviews, she heard a common expression of knowing one’s own strength to withstand the neurological storms of seizures and to move beyond these episodes. She heard that coping with the paradoxical realities of being one person while seizing and another while healthy were different for each individual.  And, she discovered that while epilepsy presents many commonalities, the epilepsy journey is uniquely experienced. For some, the condition is a minor distraction, while for others it presents huge obstacles.  It is a paradoxical life to be lost then found, and to be sick then healthy over and over again.

What Katherine wants us to realize through this work is that all persons with epilepsy have a powerful ability to accept oneself amidst a world that in uneducated about epilepsy, and often reacts cruelly based on the ancient stigma associated with the condition.  She thinks of this mural as a prelude, or wake up call, for the work needed to create a more accepting culture.

A few weeks ago, on a very cold  day, an idea that began many months ago finally became a reality.

Katherine Chilcote finishes installation of "Beyond the Storm"

Katherine Chilcote finishes installation of “Beyond the Storm”

Katherine installed “Beyond the Storm.”  This spectacular mural is her gift to the city, and to all those with epilepsy.

The following individuals/foundations contributed to the project and the Epilepsy Association is very grateful for their support.
The Char and Chuck Fowler Family Foundation,  Amy E. Kellogg, Frank H. Porter Jr., J. Patrick and Diane Spirnak, Tuni and Lee Chilcote, Kathy and James Pender, Reginald and Lynn Shiverick, Medical Mutual, Kitt and Mark Holcomb, Paula Sauer.  The project was also supported by:


We invite you to come see the mural at 2831 Prospect Avenue, Cleveland Ohio.  We also invite you to share your story by leaving a comment.  What do you think the images in the mural mean?


Written by:  Andrea Segedi

Andrea is on staff at the Epilepsy Association in Cleveland, and worked with the volunteers, donors and Katherine to create this mural.


Increasing Epilepsy Awareness by Michael Wesel

Scenes from the charette: Top row - Katherine Chilcote & Lucy and Lisa coming together.  Bottom row - creating scenes for Katherine to paint

Scenes from the charrette: Top row – Katherine Chilcote & Lucy and Lisa coming together. Bottom row – creating scenes for Katherine to paint

This is my sixth blog for the “Insights into Epilepsy” website. I have intractable epilepsy and over the last twenty years I have had break through seizures, with varied frequency and intensity. There is something really cool going on this fall at the Epilepsy Association. They have commissioned Cleveland Outdoor Muralist Katherine Chilcote to paint a forty foot-long by eight foot-high mural that will be placed on the east side of the association office building. The purpose of the mural is to increase awareness about epilepsy, bring attention to the agency and contribute to the revitalization of the neighborhood, by depicting the life experiences of people who live with epilepsy.

In order to help the artist complete the mural, the agency held a charrette, which is a community meeting or focus group where the stakeholders of a project get together and find a solution to an issue at hand. The people who attended shared their life stories and experiences living with epilepsy. This meeting helped Katherine create the imagery that is expressed in the mural. The mural depicts a public expression of the life experiences commonly shared by people who suffer from epilepsy. This fall you should drive by the Epilepsy Association offices and take look at the beautiful mural that Katherine is creating.

Sharing experiences at the mural charrette

Sharing experiences at the mural charrette

The agency has not yet reached its funding goal for this project. If you are interested in donating, make your checks payable to the Epilepsy Association and mail to 2831 Prospect Avenue, Cleveland, Ohio 44115-2606. For more information contact the Epilepsy Association: Andrea Segedi, Director of Special Gifts & IT, (216)579-1330 or email her at

If you need information about epilepsy or know someone who needs help coping with epilepsy, the Epilepsy Association of North East Ohio might be able to help or let you know where you can get help. Give them a call at 216-579-1330.

Blogger Mike Wesel

Blogger Mike Wesel

ADA – Know Your Rights – By Michael Wesel

Mike Wesel, Attorney & CPA

Mike Wesel, Attorney & CPA

Editor’s Note:  Unemployment rates for persons with epilepsy reach nearly 50%.  The Epilepsy Association is working to reduce this number.  On March 26, 2014, the Association is hosting a seminar for persons with Epilepsy looking for employment.  In addition to Mike’s presentation about your rights, human resource specialists will make presentations and provide hands-on, in-person help.  This includes a review of your resume and job interview role-playing.  Please share this information with everyone you know who has epilepsy.  To register log onto

This is my fifth blog for the Insights into Epilepsy  website. I have intractable Epilepsy and over the last twenty years I have had break through seizures, with varied frequency and intensity.  The Epilepsy Association is holding a seminar entitled Ease into Employment: A Program to Kick-Start Your Job Search.  I was asked to present a segment entitled ADA – Know Your Rights as well as write this article with the same theme. This is a complex area of law and this article is meant to be informative and should not be construed as legal advice.

The Americans with Disabilities Act of 1990 (ADA) prohibited disability based discrimination and protects disabled persons from discrimination in employment.  The definition of disability under the ADA was gradually narrowed by case law.  In 2008 Congress passed the Americans with Disabilities Act Amendments Act which broadened the definition of a disability.  The Amendments Act and its Regulations (promulgated by the EEOC) indicate that the emphasis should be on whether discrimination has occurred not on whether the individual has a disability.

Before the ADAAA and its Regulations, Epilepsy, because of its episodic nature did not always meet the definition of a disability. The Amendments Act and its Regulations list Epilepsy as a condition that would always meet the definition of a disability.  Although the ADAAA and its Regulations do not create a list of “per se” disabilities, they created a list of conditions that “virtually always” will meet the definition of disability and Epilepsy is on that list.  Satisfying the definition of disability is just the first step in gaining protection under the ADA.

The ADA prohibits a “covered entity” from discriminating against a “qualified individual with a disability.”  A covered entity is defined in Ohio as a company with four or more employees, with fifteen or more employees and engaged in interstate commerce or a Labor Union.  A qualified individual with a disability is defined by the state as an individual “who with or without reasonable accommodation, can perform the essential functions of the employment position that such individual holds or desires.”  For example, if I don’t have a driver’s license, due to my epilepsy, I could not apply for a job that required me to drive and be protected under the ADA.

The employer has a duty under the act to make reasonable accommodations for its disabled employees.  This means that the employer must try to make the existing facilities readily accessible and usable to individuals with disabilities.  This can be done in a variety of ways.  However, an employer is not required to provide an accommodation if it would pose an undue hardship which is defined under the act as an “action requiring significant difficulty or expense” when considering the facts and circumstances.

The ADA prohibits employers from making inquiries about disabilities or requiring medical exams before an offer is made however, they can ask applicants about their ability to perform the essential functions of the job.  Once an offer of employment is made, the employer can require a medical examination, but only if all employees in that particular job category are required to do so, and the results are kept in separate files and treated as confidential.  The employer may not withdraw an offer from a disabled person based on the results of a medical exam unless the results bring into question the person’s ability to perform the essential functions of the job and a reasonable accommodation cannot be made.

The ADA does not protect an otherwise qualified individual if they are currently engaged in the illegal use of drugs.  The employer may also prohibit the use of alcohol.  The ADA takes no stance on drug testing.  It is neither prohibited nor encouraged by the act.

Once you have the job the ADA prohibits disability-based harassment.  Harassment can occur either by a supervisor or by coworkers.  Harassment is prohibited whether from the employee’s disability per se or from his request for accommodation.  No one deserves to be discriminated against no matter who they are.

Before I close, I would like to thank Sheldon Starke, a friend and colleague of mine, who practices in this area of the law and helped me get a good understanding of the ADA.  If you find this article intriguing and would like to hear a more detailed discussion of this topic and others, please join us at the Epilepsy Association’s Seminar, Ease into Employment on Wednesday, March 26th, 2014 at the Epilepsy Association Office.  March 26 is Purple Day® or the Global Epilepsy Awareness Day. Please don’t forget to wear purple, I know I will be!

Grandma Thornton is inspired by Macey Dillon’s Strength & Positive Attitude

2014 Featured Family - the Dillons

2014 Featured Family – the Dillons

Editor’s Note:  The 2014 Winter Walk is this Saturday – January 18, 2014.  The Walk is really two walks held simultaneously and the SouthPark Mall in Strongsville and the Great Lakes Mall in Mentor.  Registration is still open for the Walks.  The Dillon Family is a long time supporter of the Walk.  They walk to support Macey.  And her story was submitted by Grandma Thornton.  Macey and her family will be at SouthPark Mall.

Macey is a strong, normal child on the outside, but inside her brain is very busy. In March of 2009, Macey had her first grand mal seizure. Her pediatrician felt this was an isolated occurrence, but a Sleep Deprived EEG showed she had Benign Focal Epilepsy, which is usually seen only during sleep.

In July of the same year, Macey’s seizure activity increased so that her neurologist placed her on medication which eventually stopped her grand mal seizure activity. However, during that summer we began to notice that Macey seemed to be very clumsy. She would often trip and fall over nothing.  This could happen 30 times in a day!  It was then that Macey was diagnosed with a rare kind of seizure called “drop seizures”. This is almost never seen in children with Macey’s type of epilepsy and her physician had never seen one like it. With medication change, her seizures were able to stop and the entire family was able to take a deep sigh of relief!

In 2010, Macey entered 2nd grade. The first couple months went well, but then she began to show extreme cognitive regression and poor memory.  She also had sleep issues and napped frequently.  Once again Macey was tested and the results showed another sleep deprived EEG.  In April 2011 Macey was diagnosed with a rare form of epilepsy called ESES (Electrical Status Epilepticus during Sleep). She had continuous seizure activity for 85-95% of her sleeping hours, as well as some during the time she was awake. As a result, Macey was not moving short term memory into long term memory so what she learned one day would be forgotten the next day.

Again Macey rallied. With additional medication and special education intervention, Macey has improved tremendously. Today, she plays goalie for a traveling soccer team, plays basketball, and has many good friends. She is such a joy! We love her attitude and strength. Her parents and brother support her all the time. And, recently, Macey had another EEG and discovered she is now down to having seizures 25% of her sleep time!

We support the Epilepsy Association Winter Walk because the Association services help families cope with epilepsy.  We invite you to join us on Saturday, January 18th.  This is the one event where the entire Epilepsy Family – children and adults, their families, friends and care-givers come together to share our stories and support each other.