Summer/Fall 2014

Family Camp started 25 years ago for children living with epilepsy and their families. Today, Family Camp is open for “kids of all ages,” from 1-100 years old! For 24 years, we gathered at Camp Libbey, the Girl Scout Camp in Defiance, OH. Today, we have a new home at Camp Frontier, The Boy Scout Camp in Pioneer, OH.

HAPPY 25TH ANNIVERSARY FAMILY CAMP If a picture paints a thousand words, here’s my story about this year’s Family Camp ... Please enjoy!

www.epilepsycenter.org

Newsletter of the Epilepsy Center of Nor thwest Ohio addressing issues of Epilepsy/Seizure Disorders/Developmental Disabilities

Family Camp is so much more than an annual event offered by The Epilepsy Center. It’s more than a place. It’s a feeling of being connected to kindred spirits. It’s a magical weekend of sharing, laughing, singing, dancing, and breaking bread together, all offered at no cost to our families. Special thanks to Boy Scout Troop 332 and their leaders for helping to make the magic!

Dr. Hongyan Li

Swimming

Boy Scout Troop 332

Rifle Range

Frontier Downs Horse Race

Family Portrait

Climbing Tower Archery

Fishing

Square Dancing

TorchLight – Summer/Fall 20142

Letter from the Executive DirectorBy now many of you who follow the developmental disability world have probably already heard that the Disability Rights of Ohio (DRO) did a study of the Ohio developmental disability programs and had made several determinations that may impact the future of services delivered to individuals with developmental disabilities. I wanted to briefly address that in my letter as we currently serve nearly 60 individuals in the community with developmental disabilities.

The overlaying theme of DRO’s study was that there were not enough choices or options for individuals that reside in Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IIDs) to be integrated into the community with others who do not have disabilities. The DRO stated that even the efforts by the State to decrease the size of ICF/IIDs and Developmental Centers (DC) by moving them into a smaller ICF/IIDs (8 beds or less) did not mitigate the inherent segregation. They also stated that the heavy reliance on ICF/IIDs and DCs fosters segregation in employment and day services.

I would like to address how the Epilepsy Center’s DD programs stack up to these findings. We provide care for individuals in two small ICF/IIDs (6 people in one home and 8 in another) along with another 25 individuals in smaller “waiver” funded settings. All of these settings, both the ICF/IID and the waiver homes, are in neighborhoods in the City of Toledo.

If you drove past either of our ICF/IID homes you wouldn’t be able to tell if they were a single family home or a “facility” for people with developmental disabilities. The residents are given many choices to participate in the community, volunteering at local non-profits, and are always open to visits from friends and families to their home. While these small ICF/IIDs are classified as institutional settings this is clearly not the case. Do they do a lot with each other, go out to eat, shop, go to dances and picnics together? Certainly they do, but because they are friends and family to each other, the same as any other family and friend relationships do.

It’s all about giving individuals with developmental disabilities choices. Choices to work if they choose. Choices to live with their friends. Choices to volunteer with other organizations. Choices to live their lives to the fullest.

We at the Epilepsy Center promote choice every day for our clients we provide services for. We are ready for any change that might come down from the DRO’s investigation because we offer choices and support as much community integration as possible. If the clients in the ICF/IID CHOSE to move out and live in a smaller home or apartment with a few roommates we will be ready to make that happen for them. But of course only if THEY chose to and not the DRO nor the State or any other government entity. Let it be their choice.

Thank you for listening.

Roy J. Cherry, CMA Executive Director

Roy Cherry

November is Epilepsy Awareness MonthMr. Webster defined synonyms for awareness as, “sensibility, mindfulness, aliveness, appreciation,” and, “consciousness.” To be aware is to be “conscious and understanding of.”

November is Epilepsy Awareness Month. Why November? I’d like to think it is because fall is the season of change. It is the time of year when nature reveals her brightest colors and richest scents. She naturally forces our attention to her. What better time of year to wear our bold and vibrant purple and draw attention to epilepsy? The reason the research is so underfunded is because people don’t know about it! Nobody really talks about it. We need to change that. Won’t you please join us in our global efforts to make our neighbors, friends, and communities “conscious” of epilepsy and help them gain an “understanding”? It matters.

– Karen Diaz, Program Assistant

“I sing because I am happy. I sing because I am free.His eye is on the sparrow,

and I know He watches over me.”On August 21, 2014 we said goodbye to Danny Tate. For over 30 years, Dan loved and was loved by his family of friends at The Epilepsy Center. He found joy and a reason to smile—and he had such a brilliant smile!—every day, no matter what life threw at him.

Dan was a joker and loved to tease his roommates and staff. He enjoyed dancing and singing with anyone he could get to dance and sing with, and with his charm, it wasn’t hard to get a partner. He loved spending time with his staff and would go just about anywhere and do just about anything as long as they agreed to do it with him. He loved the ladies and was very chivalrous, watching out for their safety and protecting them from perceived threats. He was a friend and a true gentleman. We all miss him.

3www.epilepsycenter.org

PGT

PGT – New Penta Career Center Hole Links at Fifth Third Field

Golf for Andy

Summer Filled with Golf and FUNraising!The Epilepsy Center celebrates 25 years of Miniature Golf!On May 30th we at the Epilepsy Center put on the 25th Practically a Golf Tournament to raise funds for the Center’s Awareness, Education and Outreach programs about epilepsy. It was once again a beautiful day and marked the 4th year at Levis Commons Clock Tower in Perrysburg Ohio.

This year’s event saw over 200 “golfers” come out to participate in this most unusual golf outing. Two flights were needed to accommodate the increase in participation and help move the tournament right along. Back by popular demand were Felix the Cigar Roller and DJ Richie who spun tunes the entire day and evening.

When the tournament was over the team sponsored by Rudolph Libbe Properties were the tournament champions taking home the famous flame trophy and large gift basket full of goodies and gift certificates.

This was by far the largest PGT we have had to date and netted over $28,000 for the Awareness, Education and Outreach programs. This success was in large part due to the many sponsors and teams that participated. Special thanks to Automatic Handling who was this year’s Event Sponsor and Heidtman Steel who was the PGT Corporate Sponsor. There were a record number of Signature Sponsors this year, adding to the money raised and the hilarity shared.

Golf For AndySpeaking of golf The Epilepsy Center once again participated in the 9th Annual Golf For Andy tournament held at Bedford Hills Golf Club. The event is put on by the Bolbach family to honor Andy Bolbach who passed away in his sleep in 1995 at the young age of 22. Andy had epilepsy and suffered from clonic-tonic seizures. It was once again a great turn out with proceeds benefiting both The Epilepsy Center’s programs and Central Catholic High School’s scholarship fund.

Links at Fifth Third FieldAnd if that wasn’t enough golf, the Mud Hens were gracious enough to put on a golf outing at Fifth Third field as they cut out in the outfield, two 18 miniature hole courses for people to come out and play. This event benefited four local charities; Helping Hens Charitable Fund, Boys & Girls Club of Toledo, Susan G. Komen of Northwest Ohio and The Epilepsy Center of Northwest Ohio. Nearly 2,200 people came out to play a little putt-putt on the Fifth Third Field and the event raised over $30,000 for the mentioned charities.

4 TorchLight – Summer/Fall 2014

Secor 2014 VacationThis July a few of our individuals got to experience the Mississippi River first hand! Jim C. and Gerald S. along with our employees, Donna Woods and Doris Merriweather started off in Iowa and ended with a grand tour of Chicago. The trip was enjoyed by all! The adventure began on the Celebration River Boat, the largest excursion vessel on the river. They enjoyed live entertainment, great food, and lots of shopping.

After the days in Iowa, the tour bus then traveled to the Windy City. The day started with a bus sightseeing of Chicago, the group visited “old gang hot spots”, set in the 1920s. Dinner was eaten at Tommy Guns Garage where a musical skit was enjoyed. There was lots of laughs and audience participation, which always makes for a fun time!

You cannot visit Chicago without going to Michigan Avenue, better known as the Magnificent Mile, where everyone enjoyed some shopping before traveling out to the Navy Pier.

Jim and Gerald loved the trip, they were able to get away from their hectic life and relax some.

The food, the shopping and the entertainment was very memorable!

Jim said his favorite thing about the trip was sailing down the Mississippi in the Celebration River Boat and meeting Elvis! He even bought a CD with all the music from that day to have forever!

The Epilepsy Center is very excited to continue this trend of vacations for our individuals!

Pharmacy CornerHow does my medicine prevent seizures?

A seizure occurs due to the disruption in the normal “firing” of a nerve in the brain. Something in or around the nerve causes it to become unstable and it begins to rapidly give of signals, causing a seizure. Today’s medicine works by finding a way to slow down these rapid signal transmissions.

The majority of seizure medications work by facilitating a substance called GABA. GABA is a naturally occurring substance found in nerve tissue. It works by slowing down how fast a nerve can send its signal. By increasing the amount of GABA in the brain, or by facilitating the action of already existing GABA, anti-epileptic drugs can work to slow down the nerves firing and control or prevent the occurrence of a seizure.

Popular drugs that work in this manner are gabapentin (Neurontin), tiagabine (Gabitril), and divalproex (Depakote).

Many other anti-epileptic drugs work by directly inhibiting signal transmission along the nerve itself. They accomplish this by disrupting the normal channels by which signals travel. Popular drugs that work in this fashion include oxcarbazepine (Trileptal), and zonisamide (Zonegran).

By understanding the way medications work, we can better understand the side effects. Knowing that these medications slow down the ability of the nerves to communicate, common side effects like dizziness, drowsiness and loss of coordination make more sense. If our nerves are firing slower, we will experience these kinds of effects.

It is also easy to see why it is so important not to miss doses of your anti-epileptic medication. By missing a dose, the levels of medication in your body will drop and may become unable to inhibit the firing of a nerve, leading to a seizure.

Seizures can be unpredictable and scary. However, understanding how seizures occur and how medicines prevent them helps to limit the hold they can have over our lives. Following doctor’s orders and taking medicines as directed is important in controlling seizures. Knowledge is half the batter. Talk to your doctor or pharmacist about any questions you may have.

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Disclaimer: The articles and information provided in TorchLight by contributing writers do not necessarily reflect the opinions of The Epilepsy Center of Northwest Ohio. The information published is not intended to diagnose or prescribe, but is provided for the purpose of disseminating educational information related to The Epilepsy Center, its clients and supporters.

www.epilepsycenter.org

ContributorsThe following contributions have been made between March 1, 2014 and September 30, 2014. If you name is not listed and you have made a contribution during this time, we apologize for the oversight. Please contact Betty Hartman at 419.867.5950 and we will acknowledge your gift n the next issue of the TorchLight.

25th Annual PGT TournamentEVENT SPONSORAutomatic Handling International

CORPORATE SPONSORHeidtman Steel Products

SIGNATURE SPONSORSBrodbeck EngineeringFreightliner/Mizar MotorsHeban, Sommer and MurphreeMeyer Hill LynchSavage & AssociatesWaterford BankWelch PackagingService Spring Corp. Kalniz, Iorio & Feldstein, Co., LPA

New EmployeesSha’Bre NeddBrandy AndersonTeneka BankJasmine GregoryToya HughesAlana ShortAlicia WrightToinette KnightenLaura RamseyTandaglar ThomasJennifer QuinnJoyce HoustonLaura JohnsonIbronke BadmusLovett OkoyomoCarla WalkerCiera Wilcox

HOLE SPONSORS5/3rd BankAllstate InsuranceAvatarBrown & Brown InsuranceCharlie’s DodgeHuntington BankKnight InsuranceMagic WokMannik & SmithMarshall & MelhornMax Dorfmeister & Co.Miller Brothers ConstructionMulehide ProductsOmnicarePaychecksPromedicaQuimby’s PubRudolph LibbeStudio DToledo Clinic NeurologyTreu House of Munch

General DonationUpsher-Smith Laboratories, Inc.Michele ButzBob & Mary Jo ZeisloftGlass City Federal Credit UnionArthur Hills & Associates

The Epilepsy Centerof Northwest Ohio

1701 Holland RoadMaumee, Ohio 43537

email: info@epilepsycenter.orgwebsite: www.epilepsycenter.org

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NON-PROFIT ORG.U.S. POSTAGE

PAIDTOLEDO, OHIOPERMIT #565

Award-Winning Publication

The Epilepsy Center, an independent organization serving Northwestern Ohio, is a member of the United Way of Greater Toledo, Defiance, Fulton,

and Paulding Counties

Our Mission:The mission of the Epilepsy Center of Northwest Ohio is

to improve the lives of people affected by epilepsy and

those with developmental disabilities.

Our Vision:People with epilepsy and those with developmental

disabilities will attain the highest quality of life and

gain full acceptance and understanding from the

community.

The Epilepsy Center of NW Ohio Board of Trustees

Jay Feldstein, PresidentRod Bowe, Vice-PresidentLee Ann Raezer, Treasurer

Sheri Bokros, SecretaryLisa Arend

Dawn V. ChongKimberly ColeStacey HeckelBruce JosephDr. Mike NagelDina Skelding

www.epilepsycenter.org

Upcoming Events

Tailgate Party & Corn Hole Tournament Thursday, November 20, 2014

Hilton Garden Inn – Levis Commons6:00 p.m. – 10:00 p.m.

Benefiting the Epilepsy Center’s Awareness, Outreach and Education programs

• Tailgate theme so wear your team colors (Go Bucks!) • Corn Hole Tournament – cost is $5 to enter • DJ Richie spinning music all night long • Buffet Stations • Silent Auction • Cash Bar

For more information please call The Epilepsy Center office at 419.867.5950.