Program For People Living With Epilepsy (NAPSA)—A new resourceis now available for the approxi- for many years, getting to that point was difficult and I wish my dren in the United States who mation and better resources about the condition.” Results from a nationwide sur- mately 2.5 million adults and chil- family had access to more infor- have epilepsy, a disorder that causes seizures and is often confusing and frightening to the people who live with the condition and those around them. Growing up, actress Neve Campbell witnessed first hand the vey, conducted by Harris Interactive, highlight the need for more information about managing epilepsy. The survey showed that many people living with epilepsy impact epilepsy can have as she watched her cousin Coleen strug- gle with managing the condition. Ms. Campbell’s aunt, Coleen’s mother, has also been living with epilepsy for most of her life. That’s why Neve and Coleen have joined with other advocates and leaders in the epilepsy community to launch The Bill of Rights for People Living with Epilepsy, a first-of-its-kind national campaign to inform and empower those touched by epilepsy and to increase understanding of epi- lepsy in the general public. Ms. Campbell and her cousin are working with sponsor Novartis Pharmaceuticals Corporation to launch the program, which is being conducted in conjunction with the Epilepsy Foundation— New York City (EFNYC). The core of the program is The Bill of Rights, a guide to manag- ing life with epilepsy that was cre- ated by the epilepsy community for the epilepsy community. A team of adults with epilepsy, parents of children with epilepsy, epileptologists, neurologists, are unaware of the rights and resources that may be available to them. The survey of 507 adults Actress Neve Campbell, left, has watched her cousin Coleen, right, struggle with epilepsy and knowshowdifficult it can be. nurse practitioners and social workers came together with Novartis and the EFNYC to develop the Bill of Rights, which offers information to help people become more involved in managing many aspects of their condition and includes guidance on topics such as rights at school and in the workplace and current information on epilepsy and treatment options. Epilepsy can affect many dif- ferent aspects of a person’s daily life, which is one of the reasons this kind of information is so important. “After she wasfirst diagnosed, I watched Coleen struggle to maintain her confidence and her self-esteem,” said Campbell. “Although she has been able to manage her epilepsy successfully with epilepsy and 149 parents of children with epilepsy found that almost half of adults and parents (45 percent and 49 percent respec- tively) do not know or understand the legal rights and protections for people with epilepsy. “It is important for patients and caregivers to have access to the most up-to-date information to help them address the manychal- lenges associated with epilepsy,” said Blanca Vazquez, MD, director of Clinical Trials and Out-Patient Services at New York University Epilepsy Center. “People living with epilepsy must learn all they can about their or their loved one’s condition so they can be strong advocates and take an active role in managing their healthcare.” To receive a free copy of the Bill of Rights for People Living with Epilepsy and other information about epilepsy, people can call 1-877-6ERIGHTSorvisit www.EpilepsyBillofRights.com. ween eee ne eee eee ee eee eee eee eee eee WX ee een Note to Editors: Neve Campbell and her cousin are working with sponsor Novartis Pharmaceuticals Corporation on the Bill of Rights Program, which is being conducted in conjunction with the Epilepsy Foundation—New York City. The Epilepsy Foundation affiliates of Greater Chicago, Los Angeles and South Florida also contributed extensively to the developmentof the Bill ofRights. Harris Interactive conducted the survey online on behalf of Novartis Pharmaceuticals Corporation between January 7-17, 2005 among 507 adults with epilepsy and 149 parents of children (under age 18) with epilepsy. Both the adults and the children of the parents surveyed took prescription medication to control their condition. Figures for age, sex, race / ethnicity, education, income and region were weighted where necessary to bring them into line with population proportions. Propensity score weighting was applied to adjust for respondents’ propensity to be online. In theory, with probability samples of this size, one could say with 95 percent certainty that the results have a statistical precision ofplus or minus 5 percentage points for the U.S. adults with epilepsy sample and plus or minus 8 percentage points for the parents of children with epilepsy sample. This online sample was not a probability sample.
