2013 Orlando Epilepsy Walk from Epilepsy Association on Vimeo.

Our Wonderful Sponsors

Wayne Densch Charities

NSI Orlando

Kids NeuroCare

Dr. Matt Leavitt and Advanced Dermatology and Cosmetic Surgery

Pediatric Neurology, P.A.

Cyberonics VNS Therapy™

Orlando Epilepsy Center

Florida Hospital for Children – Disney Radio

All proceeds to finding answers to epilepsy and helping others in need.

Our Wonderful Sponsors

Pediatric Neurology, P.A.

Cyberonics the Makers of the VNS

Orlando Epilepsy Center

Florida Hospital for Children – Disney Radio

Still want to make a donation to this event? It is not too late!
Donate now!

The Epilepsy Association of Central Florida Thanks You!

The Charity Challenge is an annual event held at the Florida Citrus Bowl, this year it is set to take place Saturday May 18, 2013.

This event helps provide finding to over 100 charities including the EACF and EpilepsyU. Join in, have fun and help raise money for Epilepsy!

Greeting from your friends at Charity Challenge! We hope that you had a wonderful holiday season. It’s a new year, and with a new year comes new opportunities. In this case the opportunity to recapture the experience of Charity Challenge. If you have never been a part of Charity Challenge this is your chance to give back to the community while strengthen your company’s teamwork.

Join us for our 28th Annual Charity Challenge XXVIII on May 18, 2013!

Sponsorship Opportunities… Become involved with the local community through Charity Challenge! Sponsorship is not only a great chance for your company to get exclusive advertising and marketing, but also a way to give back to the community that supports you. There are many levels of sponsorship available to choose from. Visit our website to view our different sponsorship levels and pick the one that will best suite your company! CLICK HERE TO VIEW WEBSITE!

SIGN UP A TEAM! Calling all hospitality, restaurants, bars, clubs, and apartment communities! Come out on May 18, 2013 and compete in six co-ed athletic events (obstacle courses, volleyball, tubing relay, canoe relay, tug-of-war and basketball shootout)  and raise funds for local charities!  Are you up for the CHALLENGE?! CLICK HERE FOR TEAM APPLICATION!

Some of this year teams include: AAA Parking Absolutely Amazing Refinishing, Inc. Blue Green The Fountains Bubba Gump Shrimp Co. Buffalo Wild Wings I & II Candem Apartment Homes Darden Corporate I Fitness Center & Spa at Celebration Health Florida Apartment Association Grand Bohemian

More teams: Hilton Orlando Hyatt Place Lake Weston Apartments Levy Restaurants NASCAR Sports Grill Nickelodeon Suites Resort Orlando World Center Marriott I & II Palm Key Apartments Picerne Corporate Office Reunion Resort and Club at Wyndham Grand Resort Stratford Point Apartments The Cheesecake Factory Villages at Millenia Willow Key Apartments Wyndham Bonnet Creek Resort

Winners of our Raffle: win a a FIRST ROUND BYE IN within their division time:  Volleyball: Darden Corporate  Tug-of-War: Camden Apartment Homes CONGRATULATIONS!

Volunteers You can make a difference this year! Volunteers are an integral part of our organization because Charity Challenge is an ALL volunteer organization. We have a need for reliable individuals to work various aspects of this amazing event, from set up, to breakdown, to keeping score and help our head referees in each sporting event. We can not do it without YOU! Join now to be a part of this great event! Volunteers 2013 Volunteers Application

Charities Charity Challenge is not only for teams and sponsors. Charities can also be involved! help our teams, sponsors, and volunteers raise more money for YOU. Become a part of this amazing event with Orlando locals! There are three easy ways to maximize the amount of money your organization will receive: CCXXVIII How to get involve!!

Its the end of January, How is your new years resolution coming along? If your new years resolution was to get in shape, check out this special package! It’s a gift certificate for a (four)- twenty minutes one on one personal training sessions at Elite Strength & Fitness. The first person to call our office at 407-339-3888 with the min. bid will get this great package! Min. Bid: $60.00 A value of $240 Elite Strength & Fitness focuses on a high intensity “slow motion” method of strength training. The best part is that they will work around your busy schedule. Elite Strength & Fitness Website

Viewing Party Our annual viewing party is going to be in February at Cafe Murano, make sure to closely monitor posts for the specific day. More information coming soon!

The post Charity Challenge CXXVIII -May 18, 2013!!! Start a TEAM now! appeared first on EpilepsyU.

In1989 CSHB 229, known as the Seat Belt Surcharge Act, authored by Jim Hinson, establishes the Epilepsy Services Trust Fund.

Florida Statute 385.207, for the care and assistance of persons with epilepsy; establishment of programs in epilepsy control, is amended to create the Epilepsy Prevention and Education Program.  A trust fund, supported by violations of seat belt and child restraint laws, is established to fiscally maintain the program.

The first distribution of Seat Belt funds is made to 12 Epilepsy Prevention and Education Service Providers in 1990.  For every violation of s. 316.613 or s. 316.614, $5 will be deducted from the civil penalty assessed under this chapter and remitted to the Department of Revenue for deposit in the Epilepsy Services Trust Fund.

Additional Information:

State of Florida Seat Belt Laws

In a car crash you are much more likely to be killed if you are not wearing a seat belt. That is why Florida has seat belt laws. The law states that the front seat passengers must wear seat belts. This law applies to any car manufactured since 1968.  In addition, all passengers under 18 years old must wear a seat belt or be otherwise restrained by a child car seat. It is against the law to operate a vehicle if all the passengers do not meet these standards.

Summary of Mandatory Seat Belt Laws

Seat belt laws apply to all cars, pickup trucks, and vans operated on Florida roads.

All passengers in the front seat must wear a seat belt.

All passengers under 18 must wear a seat belt

Florida Child Restraint Requirements

Children 3 and younger must be secured in a federally approved child-restraint seat.

Children 4 through 5 must be secured by either a federally approved child restraint seat or safety belt.

The Driver is responsible for buckling up the child.

Florida was the 28th state to enact a primary seat belt law.

We celebrated our founder, Merle Evanchyk’s, 90th birthday, the EACF’s 50 year history and International Purple Day. Merle Evanchyk was even presented a special proclamation from the City of Orlando officially making March 24, “Merle Evanchyk Day”!

Some of the activities were hula-hoop contests, egg-in-spoon races, sack races and we had PJ the Clown on hand twisting funny balloons and making everyone laugh and smile!

Here is the video our Executive Director, Chuck Carmen recorded and pictures taken by our board member, Jennifer Felder. Thanks to all of our epilepsy supporters, volunteers and special thanks to Orlando City Councilwoman Patty Sheehan for presenting the proclamation!

Click here to view the gallery on Flickr.com

Milestone Twenty Five Years Ago This Year: A  Governors’ Task Force on Epilepsy was established by the Legislature to evaluate then current epilepsy service levels in the state, identify additional service needs, determine funding support for those recommendations, and identify changes to the Florida Statutes and the Florida Administrative Code to be enacted providing authorization for the development and implementation of a Comprehensive Epilepsy Services Program for Florida.  The first program manual was developed and distributed to all of Florida’s service providers.

This was the first time that Epilepsy services was recognized as an inherent need to Florida citizens and the first time that state government sought to standardize Epilepsy Services.

“I started Purple Day because I thought I was the only one with epilepsy and I wanted other people to know that they’re not alone and to see if there’s others out there,” Cassidy Megan told CBC News.

She started the idea in 2008 at school — everyone at school would wear purple in epilepsy awareness.

“She emailed every member of Parliament that year. She, we started the Facebook group and it just snowballed from there,” said Angela McCarthy, Megan’s mother.

The MP for Cassidy’s riding tabled a private members bill to officially declare March 26 as Purple Day.

“She’d had her first seizure at the age of seven and I think like so many people, especially young people who have epilepsy and experienced a seizure, they see that people don’t know what to do, that they don’t know what it is,” said Geoff Regan, MP for Halifax West.

That bill has just passed third reading with unanimous support and is now on its way to the Senate.

“The process of actually doing this, of having it debated in Parliament, having it discussed, has value because that too creates awareness,” Regan added.

The hope is that will lead to more people learning the real facts about epilepsy — how to recognize types of seizures, what to do in the event of a seizure and when to seek medical help.

“Her seizures can come and go. Some days she can have none, and there’s sometimes she can have two or three a week. Her medication helps a lot. It controls a lot of the seizures,” McCarthy said.

It’s not yet clear if the bill will pass in time for this year’s Purple Day.

“I hope, I’m not quite sure, but I hope,” Megan said.

“I’d love it if they could pass it very quickly but I’m confident that it will be passed in time for next year’s March 26 Purple Day and preferable for this year,” Regan said.

Megan said she is pleased to see her idea spread so far.

“It feels really nice and I’m really proud and happy with how big it’s gotten and how far the word’s gotten out,” she said.

At the Board of Directors meeting held on February 16, 2012, Teri Reed was named the new Board President for 2012. Below is a picture of last year’s president, Sean Fitzgerald, literally passing the gavel on to Teri. Read more about Teri, Sean and the rest of our amazing board members here.

Outgoing President Sean Fitzgerald Presenting Plaque to Incoming President Teri Reed

May 09, 1993 | By Nancy Imperiale of The Sentinel Staff

Merle Evanchyk has never carried a child in her womb, felt a labor pain or nursed a newborn.

Yet she is every bit a mother.

And not just because she has raised children – although she has done that. She also raised a grandchild.

But 71-year-old Evanchyk is more widely appreciated on this day for giving birth to a multimillion-dollar, multidimensional baby – Florida’s epilepsy-support movement.

This helping network lobbies for people with epilepsy and provides a multitude of services, from medical screening to job assistance to educating the public about the disorder.

It all began simply as some desperate parents crowded around Evanchyk’s kitchen table in her Orlando home, seeking answers to a bunch of mysterious symptoms that threatened their children.

”There are a lot of mothers, and fathers too, who owe an awful lot to Merle Evanchyk,” said Charles Gray, an Orlando lawyer whose daughter has epilepsy. ”If ever there was a local Mother Teresa, she would be it.”

Evanchyk – a gray-haired woman who favors polyester prints and pearls, giggles a lot and swims in her spare time – didn’t set out to be dubbed the ”Mother of Florida’s Epilepsy Movement.” She just wanted to be a mother. But even that came unexpectedly.

In 1947 she and husband Charles ”Chick” Evanchyk were living in Cincinnati when they got a call from a local orphanage where Merle was a volunteer. The orphanage had two babies – a 17-month-old boy and his 4-month-old sister – whose parents had abandoned them. The boy was extremely upset. Could the couple take the little ones home temporarily?

”But the minute you held them, you knew they were yours forever,” said Evanchyk. The couple adopted the babies and named them Larry and Linda.

It wasn’t long before Evanchyk noticed something unsettling about her daughter.

As a baby, Linda would sometimes stiffen in her mother’s arms. When she was older, she would run in from playing, plop on the couch, stick her thumb in her mouth, stare ahead and rock back and forth, oblivious. At school, teachers sent home notes: ”Linda’s disruptive. She misbehaves.”

Doctors would say, ”Oh, kids do these kind of things.” Some recommended a psychiatrist.

Then, in 1960, Evanchyk awoke in the middle of the night to hear moaning and a loud thud. She ran into 13-year-old Linda’s room and found her on the floor, one side drawn up like a marionette’s. She was having a grand mal seizure.

It took six months and six more grand mal seizures – one of at least 20 known types of epileptic seizures, characterized by loss of consciousness, stiffening of the body, violent jerking of limbs and irregular breathing – before Linda was diagnosed with epilepsy. Evanchyk blames the slow diagnosis on an uninformed pediatrician who missed symptoms and did not promptly refer her daughter to a specialist.

Evanchyk scoured the library for information on the disorder. She found none. She called the state health department for information. It couldn’t help, either. It took another six months before she read her first pamphlet on epilepsy, which said it was a disorder of the central nervous system in which neurons in the brain misfire to cause seizures.

But there were still plenty of unanswered questions.

”I said to the doctors, ‘How will this affect her life? What about school?’ They said, ‘We don’t know. We can’t tell you.’ ”

Evanchyk contends there is more known about epilepsy nowadays because groups such as hers – Epilepsy Association of Central Florida – demand and fund research. There is no more powerful motivation, she said, than seeing your child unfairly labeled disruptive and deranged.

”I stress constantly that every child wants to please adults. And if they’re not, there’s some reason. We need to find out what it is, and we need to fix it.”

Meanwhile, Linda was in danger of being kicked out of school because her seizures were considered disruptive behavior. (Eventually, she was.) Evanchyk passed on everything she learned about epilepsy to Orange County school officials, hoping to enlighten them. Instead, they sent other parents of students with epilepsy her way.

Thus began the kitchen kaffeeklatsches that, in 1962, formally became meetings of the Epilepsy Association of Central Florida – chartered five years before the national movement united.

Evanchyk, although pondering retirement, still works as executive director of the group, headquartered in Orlando and funded by state, federal and private funds. More than 13,000 Central Floridians with epilepsy have passed through the doors in the past decade seeking help diagnosing the disorder, handling seizures, monitoring medication, educating an employer, landing a job or finding a sympathetic shoulder.

Evanchyk is also credited with helping persuade state legislators to fund an ongoing $2 million a year for the dozen epilepsy associations across the state. She found jobs for people with epilepsy through a contract with the Orlando Naval Training Center commissary. And most recently, in 1991 she helped persuade the Florida Legislature to approve a $5 surtax on all traffic fines for seat-belt and child-seat violations. That measure brings in $1 million a year for a statewide education and prevention program.

The education program is especially important to Evanchyk, because it is the ignorance about epilepsy that is more damaging than the disorder itself, she said.

”I guess the most graphic illustration I can give is that part of the Americans With Disabilities Act says that transportation must be available,” she said. ”But there isn’t anything in that act that’s going to protect one of our clients who has a psychomotor seizure on a bus and (without knowing what she’s doing) starts taking her T-shirt off over her head. The bus driver’s going to stop, put her off the bus, and call the police. And the next time she stands on the corner and the bus driver sees her, he goes by her. That’s not a far-fetched thing; it has happened to our clients.”

More common, she said, is job discrimination by employers who don’t understand epilepsy – or don’t want to.

”I would hope that people wouldn’t be so afraid of this thing called epilepsy,” she said. ”And that we’d know how to deal with it more appropriately and that opportunities to participate in life would not be so limited by the diagnosis.”

Evanchyk said her daughter tried to live life to the fullest, even bearing a healthy son in 1973.

But Linda died seven years later, at age 33, in her sleep. The cause is unknown, but an autopsy revealed the source of Linda’s epilepsy – a small brain tumor that CAT scans had never found. Evanchyk and her husband raised Linda’s son, Charlie.

After Linda’s death, Evanchyk continued to fight.

”Virtually none of the programs that she brought into existence did her daughter benefit from,” said Willie May, Orlando assistant state attorney and association board member. ”Yet she’s continued to make this her life’s work. That’s significant.”

For Evanchyk, it’s been more like motherhood – equal parts pleasure and pain.

”It’s satisfying to know you’ve been a small part of the solution to some problems,” she said. ”But there’s so many things still unfinished. I find myself constantly thinking, ‘Oh, I wish I was younger and smarter.’ ”

In 2008, nine-year-old Cassidy Megan of Nova Scotia, Canada created the idea of Purple Day. Motivated by her own struggles with epilepsy, Cassidy’s goal is to get people talking about the disorder in an effort to dispel myths and inform those with seizures that they are not alone. She named the day Purple Day after the internationally recognized color for epilepsy, lavender.

In 2009, the New York-based Anita Kaufmann Foundation and Epilepsy Association of Nova Scotia joined forces to launch Purple Day internationally. As global sponsors of Purple Day, both organizations are committed to partnering with individuals and organizations around the world to promote epilepsy awareness.

The combined efforts of AKF and EANS have lead to the involvement of numerous organizations, schools, businesses, politicians and celebrities around the word. Last Purple Day, people living in countries around the globe wore purple to support epilepsy awareness. In fact, people in all continents aside from Antarctica proudly displayed their purple hearts.

UPDATE: Planning for Purple Day 2012 is now underway! For more information on how you can get involved, visit www.purpleday.org.

Join us in wearing purple on March 26, 2012 to support epilepsy awareness worldwide.