Fairfield County residents will be out in force on Sunday, May 19, 2019, as they show their support for epilepsy awareness and the Epilepsy Foundation of Connecticut (EFCT) by participating in the Walk to End Epilepsy (formerly known as Sharon’s Ride.Run.Walk for Epilepsy), which will be held at the Cove Island Park in Stamford, Connecticut. Registration for the Walk begins at 9:00am and the event starts at 10:00am. Registration is $35 and includes a t-shirt, lunch and a purple bandana for dogs. Note: dogs are welcome on-leash on the walk path at this family-friendly event.
Registration is available online at epilepsyct.com/walk or on-site at the event. Stamford Mayor David Martin will be there to kick off the walk and guest speakers include motivational speaker Beth Usher and Emma Borys, teen ambassador for the Epilepsy Foundation of Connecticut. Greenwich residents Danielle Blaine and Dawn Clisham are co-chairs of the Walk.
More than 63,000 children and adults in the state of Connecticut suffer from epilepsy and one out of 26 people will develop epilepsy at some point in their lifetime. Epilepsy affects more Americans than autism, multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s diseases combined.
Sadly, one out of three will have uncontrollable seizures even while on medication.
Events like the Walk to End Epilepsy raise important funds for school education services, teaching proper seizure first aid, building community awareness of this common condition and busting myths, government lobbying to protect epilepsy patients and their right to life maintaining medications, and support programs that help lift patients to a fulfilling life.
This year’s honored speaker is Beth Usher, motivational speaker and Connecticut resident who lives a full life despite having half her brain removed. Her wisdom and humor help others overcome their obstacles too. Beth was also a long-time friend of Mister Rogers and credits his early support as one of the reasons for her “choosing happy.” Emma Borys from Westport, Connecticut, is a teen ambassador for the Epilepsy Foundation of Connecticut and will speak about growing up through the school system with uncontrolled seizures and with the help of EFCT, family, friends, teachers and administration, how she became the poised, confident mature student she is today.
Motivational speaker, survivor and thriver Beth Usher enjoyed her early pre-school years and then suddenly, at the age of five, after numerous seizures, was told “her brain was dying.” Prior to this Beth states, “we were all a happy and hard-working family enjoying all life had to offer.” Her father worked at University of Connecticut where he began as a football coach when Beth was young and recently retired as the director of Admissions. Her mom began was a researcher at the University and retired as the director of Undergraduate Research. Beth’s family credits the UConn community for surrounding them with great therapists, doctors, pharmacists, educators and friends in search of control and support while they struggled for a cure. Beth shared her journey with a class at the UConn-Stamford branch a few years ago.
“People often ask me, How can someone enjoy life after suffering hundreds of epileptic seizures a day, have the removal of the entire left side of their brain, spinal fusion, loss of function of the right side of the body, a two-moth coma, loss of vision, years of physical therapy, rejection, disappointment and loss?” said Beth Usher. “How can I enjoy life? I thrive on humor, love, kindness and by making positive choices many times throughout my day. My favorite quote is by Carl Yung: ‘I am not what happened to me, I am what I choose to become.’ I chose “HAPPY” with the help of a loving family, supportive teachers, brilliant and caring medical professors, my community, church families and encouraging friends such as Mister Rodgers, Dr. Ben Carson, The Association of Applied and Therapeutic Humor, Laughter Yoga, NYGoofs and more. I’m living a happy life because I can and you can too.”
Westport resident Emma Borys was selected as the teen ambassador for the Epilepsy Foundation of Connecticut. She is part of a program called Teens Speak Up! which provides an opportunity for teens with epilepsy and their parents to visit the nation’s capital, receive advocacy training, meet with their legislators, and tell their personal stories. Teens Speak Up! is part of the Public Policy Institute. Teens from across the country are nominated by affiliates and selected by the Foundation to participate in the program. After receiving training, each teen is asked to turn that training into action in their respective home districts through our Year of Service program.
Emma’s epilepsy story began at the age of 11 when she started experiencing staring spells and eyelid fluttering. She sometimes stumbled or had myoclonic jerking of her hands. As the symptoms progressed, Emma’s mom made an appointment with the neurologist. Before they were able to see the neurologist, Emma had a tonic clonic, or grand mal seizure in the front seat of the car. “I was driving on the Merritt Parkway on the way to the orthodontist, Emma began having eyelid flutters in rapid succession. She than began having full body convulsions. Finally, she slumped over and lost consciousness. It was the scariest moment of my life,” remembers Emma’s mom Aimee.
Since then Emma has never had complete seizure control and she has faced many challenges with her medication. These challenges have greatly impacted her life. During the last semester of tenth grade, Emma was homebound because her seizures were not controlled and her medication had a very sedating effect on her making it very difficult for her to learn even though she is extremely bright.
The school administration was supportive of Emma’s needs, however there were individual teachers who demonstrated a frustrating lack of understanding of Emma’s condition. The family then had Monica Anzelone from the Epilepsy Foundation of Connecticut do an in-service training for Emma’s teachers and administrators so that they would have a better understanding of how epilepsy affects her.
This past summer Emma improved and was able to work as a counselor at the Earthplace summer program, attended vocal camp and was a Harbor Watch intern. This year, she is a senior at Staples High School, attending full-time, and has been able to participate in programs such as being the crew head for the Players production of “Legally Blonde.”
“The EFCT has helped immensely,” said Emma’s Mom Aimee. “They provided free training for Emma’s teachers. A lot of educators don’t know how epilepsy impacts kids. It’s hard for parents to do this on their own. Each child has different symptoms and reactions to medications. It’s helpful when the EFCT can describe each child’s case individually.”
Registration and additional information for the May 19, 2019, Walk to End Epilepsy in Stamford, Connecticut, can be found at epilepsyct.com/walk. For more information visit epilepsyct.com or call 860-346-1924.