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.
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