In a perfect world, things that break are usually fixed. Bones are set; cuts are stitched shut; heart valves created anew. But what if you had to tell your child or loved one that their epileptic seizures, a disabling disorder affecting as many as one in ten Americans, won’t go away in their lifetime and that medical science offers no guaranteed cure? You would certainly want to know how to help, especially how to find a way for them to live a more normal life. You’d want relief from the ongoing anxiety that plagues persons living with epilepsy every hour of every day. You would undoubtedly turn to the Epilepsy Foundation of Colorado.
Foundation Director Gail Pundsack, at the helm for the last seven years, is hopeful that misperceptions about epilepsy will wane and that more progressive research and public awareness will release those challenged by epilepsy from isolation and fear. In the meantime, medical advancements provide some relief and control. “There’s still such a stigma about epilepsy,” said Pundsack, “mainly because people lack understanding. Those who are being stigmatized are rendered powerless and feel dehumanized. That’s got to change.”
That change is taking place in part thanks to life-saving educational programs offered by the Colorado Epilepsy Foundation, available to parents and families statewide. It’s a critical service since more than 50,000-plus Coloradoans are affected at present. Led by trained professionals who are all volunteers, focus groups meet weekly in churches, schools and living rooms across the metro area to explore resources and provide help, including referrals for medical treatment. Anyone seeking counsel can call a staffed toll-free phone line manned by qualified professionals in social work and psychology.
Among the finest support programs is the Foundation’s annual four-day summer camp, held each July in Estes Park. It’s a place where children with seizures learn what they can do, not what they can’t. Founded in 2000, the camp is named after Jason Fleishman, the late son of Craig Fleishman. Jason, an outstanding student and youth leader, was diagnosed with epilepsy at the age of 15 following a skiing accident. The damage resulted in a host of neurological and physical problems, including the onset of epileptic seizures. Jason dealt with the setback bravely and went on to Middlebury College, armed with courage, self-confidence and empathy for others. He made it a priority to help disabled kids learn to ski and became a youth board member of the Vermont Epilepsy Foundation.
In 2002, Jason, then 23, succumbed to meningitis. In an effort to keep his son’s vibrant memory alive, Craig Fleishman saw an opportunity to commemorate Jason in a positive and productive way and endowed the then-fledgling camp, naming it after Jason. Here, others with epilepsy could experience the outdoors in a safe and medically supervised environment, staffed by caring counselors. Today, 70% of children attending the camp are on scholarship, enjoying an exceptional experience that can help change their self-image and understanding of their condition. The camp has grown so popular that this coming July, two sessions will be held, one serving 13 year-olds and under, and the other, older teens.
Tim and Tracy Murray of Evergreen can’t say enough about the joy and sense of freedom their 12-year old daughter Avery feels at Jason’s Camp. She has had epilepsy since birth, but thanks to medication, has it mostly under control. Then again, she never knows when a seizure might occur. “But for four days each during the last two summers,” said Tracy, “she lives carefree, able to horseback ride, swim and play like any other normal child, secure in the knowledge that help is nearby if needed.” Said Avery upon arrival last summer, her smiling face aglow, “Mom, I’ve waited my whole life for this camp!”
“The point of the camp experience,” said Pundsak, “is for these children to find strength and perseverance, and learn to move forward. At the Foundation, we’re trying to expand community education, advocate for health care reform, and raise funds for research. We are 100% funded by the private sector, an astonishing fact considering that here in Colorado, more people actually have epileps
y than MS, Cerebral Palsy, and Parkinson’s disease combined.”
The future of the Foundation is open to positive growth. Although not enough is known about epilepsy to pinpoint its actual cause, alerting people to its variations and effects is a vital step. The disorder knows no boundary, neither geographical, age nor gender. Statistics prove that one person in 10 will have some kind of seizure in their lifetime, and one in 26 will be diagnosed with epilepsy. Approximately 70% of those challenged by epilepsy can be controlled by medication, but at least 30% cannot, and therein lies the tragedy. For those epileptics who can’t afford medication or treatment and who suffer repeated or frequent seizures, they grow more and more handicapped physically and
emotionally and are unable to hold jobs. The need for assistance is urgent.
Most Americans know nothing about this almost invisible disease. But it’s more than real to thousands, many of whom are living fuller lives thanks to epilepsy foundations like the one in Colorado, an affiliate of the national association. To keep it vital and functional, caring parents and individuals connected in some personal way with epilepsy help stage the annual gala fundraiser.
A Gala Event
This year’s event,” Today’s Belle Époque” is slated for Saturday, March 8, at Denver’s historic Brown Palace Hotel. The gala will feature cocktails, a silent auction, dinner, a live auction and entertainment. The live auction includes exotic trips donated by major donors to the Foundation, so winners can expect exciting experiences.
Proceeds from the gala help fund Jason’s Camp and the care management programs offered by the Foundation. The programs include group and one-on-one counseling to develop self-care protocols, assistance with navigating the healthcare system, and expressive therapies such as stress management and art therapy. Primary funding for Jason’s Camp provides full and partial scholarships for 80 campers between the ages of 12 and 17 as well as a Jr. Camp Counselor program to help teens and young adults develop leadership skills. In addition, the gala will help to fund a second camp this summer for youth between the ages of 9 and 12.
Mission: The Epilepsy Foundation of Colorado leads the fight to stop seizures, find a cure and overcome the challenges created by epilepsy.
Main Programs: Direct support services to people living with epilepsy including community education and awareness programs; advocacy initiatives; care management; youth summer camps; toll-free help line, and professional referrals for medical resources.
How you can help: Join the new volunteer program CAPS (Community Action Partners), support and attend one of the many fundraising events held throughout the year.
Upcoming Event: Today’s Belle Époque, annual fundraising gala on Saturday, March 8 at The Brown Palace Hotel in Denver.