Sylvia Lawry, who single-handedly launched an international war on multiple sclerosis, founding both the National Multiple Sclerosis Society in the United States and the Multiple Sclerosis International Federation abroad, and who profoundly influenced research, disease management, and public policy concerning this complex neurological disease, died February 24, 2001, in New York City. Ms. Lawry was 85 and lived in Manhattan.
“The death of Sylvia Lawry was a tremendous loss to our organization and to the MS movement. Sylvia’s legacy will continue to inspire all of us who knew, or even knew of, her as we move closer each day to a world free of multiple sclerosis,” pledged Joyce Nelson, former President and CEO of the National MS Society.
“Sylvia Lawry was a private no-nonsense person to whom you couldn’t say ‘no,”’ shares Weyman Johnson, former chairman, National MS Society, board of directors. “She devoted more than 50 years of her life seeking the means to end MS and was a hero to anyone touched by the challenges of the disease.”
Born in Brooklyn in 1915, one of four children of Jacob and Sophie Friedman, Sylvia Lawry was attending Hunter College with the aim of becoming a lawyer when her younger brother Bernard began experiencing visual and balance problems. They proved to be early symptoms of MS, an unpredictable, chronic, and often disabling disease of the central nervous system. For several years, the family pursued cures without success, ultimately leading Ms. Lawry to place a small classified notice in The New York Times in 1945: “Multiple Sclerosis. Will anyone recovered from it please communicate with patient.”
When the more than 50 replies she received were from individuals as desperate as she to find encouraging news about MS, Sylvia Lawry realized the need for an organized effort to stimulate and finance research into the cure, treatment, and cause of multiple sclerosis. The result was that on March 11, 1946, Ms. Lawry, a lone young woman, gathered 20 of the nation's most prominent research scientists and founded what would become the National Multiple Sclerosis Society. From these humble beginnings, Ms. Lawry devoted the rest of her life to the pursuit of a world free of MS.
Initially incorporated in 1946 as the Association for Advancement of Research in Multiple Sclerosis with the sole purpose of sponsoring MS research, the organization was renamed as the National Multiple Sclerosis Society in 1947. This was in recognition of the fact that people affected by the disease, both patients and their families, desperately needed information and other service programs to enhance their lives while the cure was being sought. That year also, the first two local chapters of the Society were chartered in California and Connecticut.
Though Bernard's health continued to weaken, and he ultimately succumbed to MS-related causes in 1973, Sylvia Lawry saw there were millions of others like her brother who needed help. With the assistance of Senator Charles Tobey of New Hampshire, whose daughter had MS, Ms. Lawry personally lobbied Congress and persuaded them to adopt legislation on August 15, 1950, establishing what is now the National Institute of Neurological Disorders and Stroke (NINDS). Up to this time, government interest in MS was minimal with research expenditures totaling approximately $14,000. Since then, government appropriations to the Institute have steadily increased, until today they have passed the $1.5 billion mark, approximately $110 million which directly impacts multiple sclerosis.
In the same era, chapters of the Society were established across the country to better serve people with MS and their families. Diverse education, counseling, self-help, equipment loan, advocacy, and referral programs were introduced with the help of dedicated volunteers and grassroots event-based fundraising.
In 1967, spurred by the fact that at that time almost one-third of the Society’s research funds were being awarded to investigators outside the U.S., Ms. Lawry founded the MSIF (Multiple Sclerosis International Federation). The federation helped coordinate fundraising and service efforts of young societies in Canada, Britain, France, Germany, and other European countries, modeled on the American original. The federation became a catalyst for the global MS movement in Latin America, Japan, Australia, New Zealand, Africa and Eastern Europe. Today there are 43 member societies around the world. The MSIF is headquartered in London.
Ms. Lawry served as Executive Director of the National MS Society until 1982 and maintained her role as Secretary of the Multiple Sclerosis International Federation until 1997, when she “retired.” She continued to be an officer of the National Board and was a full-time volunteer, devoting her efforts to the Society's international programs and typically working a 12-hour day. “I’ll retire when MS retires,” she promised just a few months before respiratory illness ended her regular presence at the Society’s home office in Manhattan. She did continue to work from her home with colleagues worldwide and a book on her life and the history of the Society was just completed when she was hospitalized in February 2000.
Sylvia Lawry fiercely pursued her dream of a world free of MS for more than a half century. Though her vision of a cure for MS is not yet a reality, the National MS Society which she founded has devoted more than $600 million to MS research since 1946--playing a seminal part in developing understanding of the central nervous and immune systems, the two most complex systems in the human body.
Ms. Lawry’s commitment to research has also led the Society to become instrumental in the development of many of the FDA-approved medications that can reduce the number of acute MS attacks, protect the central nervous system from damage and delay the onset of more permanent disabilities.
The hard work of one young woman has resulted in an organization that today has a 50-state network of chapters expending nearly $126 million a year to serve over one million people and which devotes more than $46 million each year to support over 440 research projects internationally. The Society’s web site receives nearly two million visitors each month (www.nationalMSsociety.org); provides a toll-free telephone number that connects callers to their nearest local office (1.800.344.4867); and publishes an award-winning quarterly magazine Momentum, which has a readership of over one million. The Society also offers educational programs to health-care professionals and organizes state and national advocacy campaigns to address issues impacting people with disabilities.
Ms. Lawry was a widow and was survived by her two sons Steven and Frank Englander; her sister Lillian Wilson; and her two grandchildren Matthew and Marissa. The biography on Ms. Lawry’s life and its impact on the MS movement, Courage, was published in October 2003 by the firm Ivan R. Dee. Please direct contributions in her memory to the National MS Society or the MS International Federation, 733 Third Avenue, New York, NY 10017.