Annual Awards Honor Achievement, Commitment

By Sylvia Blair
Epilepsy USA staff
Posted: October 27, 2003

A highlight of the Epilepsy Foundation’s 35th Annual National Conference, held at the Wyndham Palace Resort in Orlando from October 9-11, 2003, was the presentation of national awards at two banquet ceremonies, each attended by over 400 people. The awards recognized distinguished achievement by a number of individuals, including women with epilepsy who have made a difference in others’ lives, journalists whose compelling stories have improved public understanding, local Epilepsy Foundations which have furthered the epilepsy cause, and one little boy who demonstrates the courage of children struggling to live normally despite seizures.

Making a Difference Award

Fifty-six year old Pamela Dorwarth of Sarasota, Fla., was named the national winner of the Foundation's “Making a Difference” award. The award and cash prize is underwritten by an unrestricted grant from GlaxoSmithKline.

Dorwarth, who is hearing impaired and uses a wheelchair, is a community activist with epilepsy who rallies her town around disabilities issues, takes on city hall to improve living conditions for residents of group living facilities, and advocates against flashing lights that are potential seizure triggers.

Dorwarth works tirelessly as a volunteer for several local and national community groups that address transportation issues, human rights, and the needs of women, children, and people with disabilities.

“Transportation is the greatest task we have to overcome,” Dorwarth told the audience at the awards ceremony. “We’ll keep fighting until everyone has the same access.

“We are defined and will be remembered by how we treat others, not by our possessions,” she said. “When I had the stroke that led to my epilepsy, I made a promise to God that if I get through this, I will continue to fight for the dignity of the disabled.”

Katherine Hayes Rodriguez of Truckee, Calif.; Georgia Johnson of San Luis Obispo, Calif.; and Dana Douglas of Fairfax, Va., were honored as Merit Award winners. Each received an expense-paid trip to the conference.

The annual "Making a Difference" award recognizes women with epilepsy who have contributed in a significant way at the local, regional or national level to:

• Support and advance quality of life for women with epilepsy;
• Inspire people with epilepsy and those with other chronic disabilities; or
• Enhance public understanding of epilepsy and its impact on women.

Nominees included moms, daughters, students, teachers, business and community leaders, volunteers -- women of all ages who have inspired and changed the lives of others.

Ninth Annual Distinguished Journalism Awards

During an emotional and riveting awards ceremony, the television, print and radio journalists were honored for their outstanding reporting on epilepsy. Some of the families featured in those compelling reports also attended the ceremony, providing moving testimony about how the experience of sharing their personal stories with the public changed their lives.

“C.J.’s Story,” a Dateline NBC-TV special report, was the winner in the television category. During the one-hour report, correspondent Edie Magnus and producer John Block documented the experience of four-year-old C.J. and his parents as they sought a solution to a severe, progressive form of epilepsy which led the little boy to have up to 300 seizures in 24 hours. The story followed the case from his epilepsy diagnosis soon after birth, to the family’s decision to take the 4-year-old C.J. halfway around the world to Australia where he underwent an experimental and successful brain operation. The program aired on November 3, 2002.

“This was a meaningful and rare opportunity to do something that really matters,” said Magnus at the ceremony. “This was a story of our time. C.J.’s parents found other parents on the Internet, and they armed one another with information. I was so honored to meet C.J.’s family.” Her producer agreed. “This is a wonderful honor and a career highlight,” said Block. Both noted that since the broadcast, the operation that removed C.J.’s hypothalamic hamartoma is now available in the United States.

C.J.’s parents spoke about their decision to document their son’s surgery on television. “When we first decided to do the show, we had some reservations. But when we met John and Edie, our concerns melted away,” said C.J.’s mother.

“When he [C.J.] woke up from surgery, it was like we won the lottery!” his mother said, adding that she felt the story was very well-documented, and that it resulted in calls from around the country from parents in similar situations.

In the print category, Brie Zeltner of the Cleveland Plain Dealer was cited for “Seizing Hope,” a feature report that gave readers an in-depth view of the battles being waged by the medical community, and by patients and their families, to cure or at least lessen the severe impact of epilepsy. The report appeared in the December 8, 2002 issue.

“Seizing Hope” documented the courage, hopes, disappointments, and unflagging determination of 13-year-old Jennifer, her family and her healthcare providers as they pursued surgical options following failed medication therapy.

“Surgery turned out not to be an option for Jennifer,” said Zeltner at the awards ceremony. “Her family was loving and supportive. They finally picked up hope in the form of the vagus nerve stimulator. And now Jennifer is doing very well. It was an honor and privilege to meet this family and to share this experience with them.”

The winner of the radio category was Sarah Ryan, news director of radio station WSRS-FM, for her March 2, 2003 public affairs report on epilepsy.

Ryan is only the second winner of the radio award in the nine years since its inception.

In a lively and fascinating half-hour discussion, Ryan and her guest explore the facts and myths about seizures and epilepsy, and how the disorder impacts the lives of people it touches.

The Epilepsy Foundation’s Distiguished Journalism Awards are selected by an independent panel of judges from academic and working journalism and are underwritten by Pfizer, Inc.

Outstanding Achievement Awards

Each year, the Epilepsy Foundation honors individuals and local Epilepsy Foundations for noteworthy activities that advance the mission of the Foundation. The following individuals and organizations were honored with Outstanding Achievement Awards for 2003:

• Epilepsy Foundation of Southeast Texas - Program Excellence
• Caroline Foster - Affiliate Staff Member of the Year
• Chris Merritt - National Staff Member of the Year
• Louis Catalano, Jr., M.D., F.A.A.N. - Excellence in Fundraising
• Epilepsy Foundation Rochester-Syracuse-Binghamton - Affiliate of the Year
• Mary Wong - Outstanding Personal Achievement
• David Labiner, M.D. - Volunteer of the Year
• Office Depot - Employer of the Year
• Senator John Lindsay - Excellence in Advocacy
• Arthur Taggart - Affiliate Executive of the Year
• Epilepsy Foundation Western/Central Pennsylvania - Golden Circle of Fundraising

A “Winning Kid”

Each year, the Foundation selects a child with epilepsy to represent courage and achievement in children with epilepsy.

Idaho resident Cody Lumley is the 2003 “Winning Kid.” Cody is 9 and has seizures following surgery to remove a brain tumor. After the surgery, he had to relearn how to walk and talk. In 2003, he received a vagus nerve stimulator implant and now has fewer seizures. Although he has some developmental lags, his parents say he wins big and little battles every day. Cody stood proudly on stage during the awards ceremony and thanked the Foundation for naming him a “Winning Kid.”