In Memoriam: Jeanne A. Carpenter, Esq. 1953 - 2003
Since its founding, the Epilepsy Foundation has advocated for the rights of people with epilepsy and strongly supported the creation of civil rights laws, such as the Americans with Disabilities Act. And we have done so with the support and guidance of inspirational leaders like Jeanne A. Carpenter.
Jeanne A. Carpenter, an attorney, former Epilepsy Foundation board of directors chair and a person with epilepsy, was a tireless advocate for people with epilepsy from the time she was first diagnosed with the condition until her untimely passing in March 2003. During her long tenure on the Foundation's board of directors, Jeanne advocated for programs to improve the quality of lives of people with epilepsy and to fight discrimination in all aspects of life. She believed epilepsy should not limit one's opportunities.
Jeanne A. Carpenter was a leading member of the Epilepsy Foundation's board of directors for eleven years and a former president of the organization. Her personality, her warmth, her humor and her commitment to a better life for people who, like herself, live with epilepsy, defined her imprint on the Foundation and its work, and on everyone she met.
Jeanne Carpenter was diagnosed with epilepsy following a generalized tonic-clonic seizure at the age of 23, fresh out of law school and ready for the rest of her life. Looking back, she realized she had probably been experiencing partial seizures for some time, but had been unable to secure a diagnosis or treatment from those entrusted with her care. Learning that she had epilepsy was a shock, and finding so little information available at the time only added to its traumatic effect. In fact, the only detailed information she could find at first was through the Epilepsy Foundation.
So began a long relationship with the Foundation. She joined the board in 1992, served on many board committees and was elected president in 1997-99. Jeanne Carpenter also had a brilliant professional career. At the time of her death, she had been a partner of the national law firm of McDermott, Will & Emery for more than 19 years, dealing with complex trade, antitrust, and regulatory issues. She was in every way an outstanding example of achievement despite epilepsy, of the ability to succeed and live well with the disorder.
And yet behind all that success was the personal struggle of a woman who continued to have seizures and who had to come to terms with a diagnosis she never expected. She was very conscious of the fact that while her success might inspire others, there were many who faced problems that could not be so effectively overcome. In her public appearances she would always take note of the overwhelming difficulties that some people with epilepsy face and their continuing need for assistance. Her vision of how that assistance could best be provided led to the development of the Epilepsy Foundation's 5-year strategic plan launched in 2000.
Jeanne Carpenter's impact on the Foundation and its work was profound. She came to the board with a passion for improved public awareness and greater access to information, born out of her own early experience. She was always the first to pick up the phone when the media portrayed epilepsy in a negative light. She also believed strongly in the Foundation's adopting vigorous advocacy positions on matters of public policy and legal rights.
But despite all the organizational contributions that Jeanne Carpenter made to the epilepsy cause, it is the person whom our community will miss the most. Her spirit, her wonderful sense of humor, her friendliness, and her unique ability to handle challenging issues were part of everything she did - and endeared her to everyone who knew her. We are grateful that Jeanne graced our lives and we will always remember her.