A Signature Struggle

Laurie Kelly was frustrated.
The Lynchburg, Virginia resident had written her congressman, Bob Goodlatte, several times. Her request was relatively simple: Endorse a bill to protect people with epilepsy from discrimination in the workplace.

Kelly had good reason to contact him. As the mother of a child with epilepsy, she knew that people with the condition face discrimination on a daily basis. By helping to get the bill enacted into law, she could help protect her daughter from facing discrimination in the future.

As a social studies teacher, Kelly also knew that civic involvement is the cornerstone of our democracy. Politicians are elected to represent the voters of their community. Unless she contacted Representative Goodlatte, a Republican, how would he know whether to support or oppose the legislation?.

At first, it seemed like an easy sell. The bill, H.R. 3195—known as the ADA Restoration Act—had strong support from more than 220 of Goodlatte’s colleagues, both Democrats and Republicans, in the House of Representatives. More than 40 supporters were Republicans, including one of the bill’s primary authors, Representative James Sensenbrenner of Wisconsin.

Despite this strong support, and Kelly’s best efforts, she couldn’t persuade Representative Goodlatte to add his name to the list. However, she never thought of giving up. “Anyone who knows me knows how passionate I am about this,” Kelly said.

The Impact of Action

More than 3 million Americans are affected by epilepsy. Yet, unlike Kelly, only a small fraction are involved in the Epilepsy Foundation’s advocacy efforts. Without those voices, we cannot address the many issues affecting people with epilepsy.

“The strength of the Foundation lies in the collective voice of people with epilepsy and their families,” says president and CEO Eric Hargis. “When we speak up, we educate elected officials about epilepsy. But we also generate support for funding, ending discrimination and improving access to medical care.”

According to Hargis, the growth of community-based epilepsy programs are an example of how the system works. These programs, funded by the national Centers for Disease Control and Prevention, are developed by the Epilepsy Foundation—often in conjunction with other national organizations and experts and administered by local epilepsy affiliates. They provide critical services to people affected by epilepsy.

For example, funds are used to create support groups for teens, increase epilepsy awareness in schools, train school nurses, educate first responders and provide culturally competent information on caregivers.

None of these programs existed before 2000. But the Foundation launched a spirited campaign to persuade Congress to provide the necessary funding. Advocates across the country called, wrote and met with their representatives and senators. They wrote letters to newspapers, talked with their neighbors and some families even came to Washington, D.C.

Success didn’t happen overnight. The combination of personal stories and political “muscle” ultimately helped convince Congress to take action. Now, each year, Congress spends more than $7 million on communitybased epilepsy programs. With your help, that number will continue to grow.

Doing Her Part

Laurie Kelly decided to up the ante. If her single voice wasn’t enough to convince Representative Goodlatte to endorse H.R. 3915, she knew what to do. Get more voices.

Working with the Foundation’s advocacy team, Kelly crafted a petition urging Goodlatte to endorse the bill. By collecting signatures on the petition, she could show Representative Goodlatte that many in their central Virginia community support protecting people with epilepsy from discrimination.

Kelly was hesitant at first, because she had never asked people to sign a petition. But she realized that the price of inaction was too costly. Her school’s annual Social Studies Fair provided an excellent opportunity to speak with friends about the matter and collect signatures.

“As I was telling parents about what we were learning [in class], I told them if they were feeling really patriotic they could even sign a petition that I was sending to Bob Goodlatte,” she said. “I was able to explain a little bit about [the issue] and was able to get 13 signatures!”

On a roll, Kelly connected with Jamie Swann, Tiffany Eimers, Terri Evans and other local families affected by epilepsy. Within two weeks, the small group collected more than 200 signatures on the petition and Jamie’s letter to the editor was published in the Roanoke Times (circulation 90,000).

The week after Thanksgiving, Kelly mailed the signatures to Representative Goodlatte. Despite all her hard work, she was cautious about her prospects for success. “I really hope these efforts make some sort of change for the better,” she said. “But if they don’t, I will know I have done my best to make the world a better place.”