Debbie Flader, Nancy Monica and Susan Axelrod frequently find themselves in large institutional buildings. These three suburban moms spend much time in hospital hallways awaiting the results of treatments for the daily seizures suffered by their daughters, all of whom have epilepsy.
It is their passion to find a better future for the girls–Noel Flader, 14; Megan Monica, 4; and Lauren Axelrod, 16–that has also led these women to the corridors of Congress as founding members of Advocates for Epilepsy, a grass-roots lobbying organization based in Lake in the Hills.
Since the spring of 1997, Flader of Hanover Park, Monica of Lake in the Hills and Axelrod of Burr Ridge have mounted a letter-writing campaign to lobby local legislators for more research funds directed at finding a cure for epilepsy.
In a little over a year, these three women have transformed their painful personal experiences into national recognition for epilepsy research.
“All of us respect what they have accomplished,” said Barbara Wilder Dershin of Evanston, president of the Epilepsy Foundation of Greater Chicago for the last 11 years. “This is borne out of a passion that can only come from first-hand experience. The rapid response of legislators is remarkable.”
The group wants to triple research dollars for epilepsy from approximately $55 million in 1997 to $170 million in the next five years. For fiscal 1999, Advocates for Epilepsy hopes to increase research funds to $130 million.
“We never thought we could make such a change in just one year,” Flader said. “Now the legislators know we are here.”
When Flader’s daughter Noel began experiencing multiple daily seizures in 1992, she thought: “I’m just a mom. I never went to college. How can I make my daughter’s future better?”
After years of various treatments, including surgery and medication, Flader’s daughter still has daily seizures. She now requires home tutoring and has a new companion, Coal, a black Labrador seizure alert dog.
In 1996, Flader went to a National Epilepsy Foundation Convention in San Francisco, where she heard a speech by former House Democratic Whip Tony Coelho, who has epilepsy.
“He spoke of the stigma of epilepsy; he had been refused for the priesthood,” Flader said. “There is need for research and awareness. He asked each person who heard his talk to write seven letters to their (representative).”
Flader did more than that. She went home and began a letter-writing campaign with the assistance and support of Prairieview School in Bartlett, her daughter’s school at the time. By April 1997, she had elicited 700 letters requesting an increase in research funds for epilepsy.
Another significant result of Flader’s trip to San Francisco was her meeting with Monica, a leader of the McHenry County parent support group sponsored by the Epilepsy Foundation.
Although their first meeting was a casual one, Flader later called Monica to request her assistance in operating the grass-roots campaign.
Monica knew that her daughter’s situation was not improving. “I had tried all available anti-convulsants, even experimental treatments,” Monica said. “I was ready to do more.”
Susan Axelrod joined the board of the Epilepsy Foundation of Greater Chicago three years ago. Her daughter Lauren had a five-hour operation in 1996 that involved drilling holes into her skull and implanting electrodes on her brain in an attempt to control her seizures. When this effort failed, Axelrod changed her focus from improving social services for those with epilepsy to searching for a cure. At that time, she hooked up with Monica and Flader.
“We are trying to get epilepsy into the limelight now,” Axelrod said. “It has been such a closet disease. When a child’s brain is bombarded with seizures, this causes significant cognitive difficulties.”
Much of the initial work of Advocates for Epilepsy has been coordinated and supported by the Epilepsy Foundation of Greater Chicago. Dershin said the foundation has given Advocates for Epilepsy financial support and training on how to visit a legislator.
“Much of the creativity and a tremendous energy has come from the parents,” Dershin said. “These are the people who are affected. They carry the message best. You can’t stop an angry parent.”
Because of the women’s work, the financial mission of the Advocates for Epilepsy has been adopted by the national group. “We have a unified mission now,” Dershin said.
To create the nucleus for Advocates for Epilepsy, Flader and Monica began with a series of brainstorming sessions with other parents in the summer of 1997. Flader also began making appointments with U.S. senators and representatives from Illinois.
“I work 40 hours a week as a volunteer now,” she said. “It was important to unify the message, to say the same thing over and over.”
One of the legislators who heard the message is U.S. Rep. John Porter (R-Ill.), chairman of the House Subcommittee on Labor, Health & Human Services and Education. His office called Flader to come to Washington to testify before the subcommittee in February 1998. Monica, Axelrod and Dershin accompanied her. At the meeting, the subcommittee agreed to support aggressive research for eradicating epilepsy.
Axelrod’s husband, David, is a Chicago-based political consultant. U.S. Rep. Rod Blagojevich (D-Ill.) has taken an active role in the cause of Advocates for Epilepsy, based on his friendship with the Axelrod family.
“The reality of living with epilepsy was brought home to me by David and Susan Axelrod,” Blagojevich said. “This winter, at Susan’s request, I attended an Advocates for Epilepsy event in Chicago and heard countless moving personal accounts of the hardships created by epilepsy for adults and children.
“For the child, it is clear that epilepsy can act as a major obstacle to realizing the goals and fulfilling the potential,” he said. “The resulting cost to a family and to society is deeply felt in both emotional and financial ways.”
Presently, he is working with Advocates for Epilepsy and his congressional colleague Rep. Neil Abercrombie (D-Hawaii), who has epilepsy, to seek more federal funding this year for epilepsy research. He has circulated a letter seeking an additional $75 million for research. This letter has been signed by 29 U.S. representatives, including Illinois’ Bobby Rush, J. Dennis Hastert, Danny K. Davis, William O. Lipinski, Donald Manzullo, Luis Guitierrez, Lane Evans and Jerry Costello. Appropriation decisions are expected after the legislative recess.
Advocates for Epilepsy leaders do not just have a local agenda. With the continued help of the Epilepsy Foundation, they have devised a national strategy. The group’s goal is to have a national chairperson, a coordinator in each state, a public relations committee, and many local volunteers. They currently have a seven-member steering committee and coordinators in Illinois and seven other states.
Flader has provided a “how-to” sheet for contacting a legislator as well as a follow-up report form to be sent to her. A periodic newsletter keeps members and interested parents abreast of recent developments. The group also has a Web site (http://www.datasync.com/(tilde)josw/epilepsy.htm).
Fundraising is a continued concern. Axelrod recently chaired a fundraiser for the Epilepsy Foundation; the June 20 event raised $72,000.
Wendy Brandon of Schaumburg, a member of the Advocates for Epilepsy steering committee and the mother of 6-year-old twins, one of whom has epilepsy, affirmed Flader’s and Monica’s contributions. “I am in awe of the work that Debbie and Nancy do,” Brandon said. “They gave us hope; they empowered us.”
There are many families who now have hope because of the founders’ efforts. “We’re just parents who have figured out the political process,” Flader said.
———-
For information, contact Advocates for Epilepsy, 4230 Greenfield Lane, Lake in the Hills IL 60102; 847-669-1260.
