A personal ad in the New York Times by a tenacious woman from New York City started the movement.
“Multiple sclerosis. Will anyone recovered from it please communicate with patient.”
-N.Y. Times, May 1, 1945
Out of desperation, Sylvia Lawry placed the ad in search of help for her brother Bernard, refusing to believe what the doctor had told them at Bernard’s diagnosis; that MS was very rare and nothing could be done to treat it. 54 people responded to the ad, and although none spoke of a cure, all wanted information.
Inspired by the response to the ad along with her passion to find a cure for her beloved brother, Lawry paired her hope with action. She suggested that respondents begin meeting together in a room donated by the American Red Cross in Brooklyn. Almost immediately, there were discussions of forming an organization to support MS research.
Humble Beginnings
Lawry first approached Tracy Putnam, M.D., Director of the Neurological Institute of New York, with the idea of launching a society devoted to MS research. Putnam confirmed that if an effective organization were established, more researchers would want to work in this field. He put together a list of prominent neurologists from throughout the country and Lawry typed invitations to them to serve on a medical board. All but one accepted.
Next, Lawry enlisted the help of attorney Irving Berkelhammer, who had responded to her ad in The New York Times because his brother had MS, to draw up papers for the organization. Lawry then convinced officials at the Academy of Medicine to donate a one-room, eight-by-ten-foot office at its headquarters at Fifth Avenue and 103rd Street in New York. Once the documents were prepared and signed, the society was formally created under the name Association for the Advancement of Research on Multiple Sclerosis.
The new organization had four basic missions: coordinate research efforts on MS in this country and abroad, gather statistics on the prevalence and geographical distribution of MS, act as a clearinghouse for information on the disease and collect funds to stimulate and support research on MS and allied diseases.
“I really had no idea what I was getting into,” said Lawry in the book “Courage” by Richard Trubo. “At the time it seemed like a simple undertaking – to raise enough money to support significant research projects. But I thought the path would be a much easier one than it turned out to be. I really believed this would be a short-term undertaking. Of course, I was wrong.”
Initial progress moved at a snail’s pace until Dr. Putnam introduced Lawry to Otto Frohnknecht, whose daughter had just been diagnosed with MS by Dr. Putnam. Frohnknecht was wealthy and very well-connected. Devastated by the news that his daughter had been diagnosed with a disease for which the cause and cure is unknown – Frohnknecht wanted a way to help spur research. He introduced Lawry to his lawyer, Carl M. Owen, who headed one of New York’s most prestigious law firms. Owen, in turn, reached out to Basil O’Connor, who had become a driving force behind the foundation supporting polio research, which at the time had an extremely high profile because of President Franklin Delano Roosevelt’s battle with the disease.
O’Connor recommended Lawry set up two boards: a board of directors to make decisions and allocate funds and a separate medical advisory board. Owen then used his contacts to form the board of directors, and after initially declining Lawry’s offer, he also became the organizations first president. On Oct. 3, 1946, the first press release was issued to announce the new organization, gaining its first national visibility.
In February 1947, 20 of the nation’s leading neurologists met for the first medical advisory board meeting. They started holding monthly meetings for people with MS in the auditorium of the New York Academy of Medicine.
Expansion and Birth of the Connecticut Chapter
With the organization growing in members, funding and national exposure, Lawry decided expansion was needed. In July 1957, the mission expanded beyond research and the organization changed its name to the National Multiple Sclerosis Society. Lawry decided that community based chapters were needed to provide services and education as well as contribute fundraising of their own. The first chapters were established in Connecticut and California.
At the local level, 60 percent of funds raised went toward local programs supporting those living with MS, while the other 40 percent went to National to help fund research. In September 1948, Yale was among the first few hospitals to open an MS clinic. The first MS support groups were also started by the Connecticut Chapter.
Around this time, Lawry enlisted the help of Edward Bernays, whom the New York Times called, “the father of public relations.” Bernays became a member of the board in 1949 and was named chairman of the society’s Public Relations Advisory Committee. He suggested they emphasize MS rather than multiple sclerosis, explaining it was easier to remember.
In 1953 the society made its first national fundraising appeal. In 1955 the society raised a record $1 million. In 1954 the MS Key was chosen as the official symbol of the society, shaped to open doors that would ultimately solve this tragic disease.
By 1960 there were 114 chapters. Lawry decided the next step was to organize a global assault on the disease. Finally, in 1967 the International Federation of MS Societies was formed.
After a push from Lawry to get the White House involved as part of the silver (30th) anniversary of the National MS Society, congress approved the establishment of the National Advisory Commission (NAC) on Multiple Sclerosis, on Oct. 25, 1972. The NAC on MS final report in February 1974 called for $18 million more from the federal government for research and established three additional government supported clinical research centers to facilitate the study of MS. Longtime society members still point to the commission as one of the high points in the MS movement.
Fundraising Events
In order to push research forward, the National MS Society began hosting fundraising events. The first Dinner of Champions was held in New York City in 1972 and honored former Notre Dame football head coach Ara Parseghian, whose daughter had MS. The MS READaTHON, ran by chapters and promoted nationwide challenged America’s children to “read for the need of others.” In 1975 every chapter participated with more than one million children registered. In 1976 the number grew to 4 million children. At the end of 1977 more than 11 million books had been read while also raising more than $11 million and over $20 by 1978.
The first MS Bike Tour started in 1980, with Walk MS several steps behind, first stepping out in 1989. In 1990 the events raised a combined $14 million. A decade later, the events raised $33 million in 2000. In 2000 the total income generated by fundraising for the year was $158 million, and as of 2000 more than $310 million had been raised through fundraising events and invested in MS research.
Research
Progress on the research front has been long and arduous. A cure remains elusive, but throughout the years more and more treatments have become available.
The first research grant was given in 1947 and went to Elvin Kabat, M.D., at Columbia University. His subsequent research identified abnormal immunological proteins in the spinal fluid of people with MS, confirming MS and the immune system are connected. Recipients of other early National MS Society grants included Nobel Prize winners such as Dr. Jonas Salk, who studied the immunology of MS, and Dr. Rita Levi-Montalcini, who described proteins that help nerve cells grow and stay healthy.
The first scientific treatment for MS emerged in 1969 in the form of a high-dose intravenous steroid therapy that is still in use today for acute exacerbations. By the late 1970’s, the first CAT scans were performed on people with MS. This technology was refined through the 1980’s to produce the MRI scan, which shows the brain in greater detail.
The approval of drugs in the 1990s and early 2000s strengthened the growing optimism within the society. In 1993, beta interferon 1-b (Betaseron) was the first drug approved by the FDA to treat the disease, not just its symptoms. With this, MS was no longer seen as an untreatable disease.
In 1996 beta interferon 1-a (Avonex) and Copaxone joined the mix, with the function of reducing the frequency of relapses and exacerbations. By 1999 Novantrone was approved to treat MS and a variation of beta interferon 1-a (Rebif) was introduced. Tysabri treatments began in 2004, ushering in a new class of drugs that significantly suppressed relapses of MS. Finally, in 2010 Gilenya was introduced as the first oral disease-modifying drug.
Looking Forward
Today, the National MS Society funds more research than any MS organization in the world. This past year alone nearly $40 million was invested to fund more than 325 new and ongoing MS research projects. In Connecticut, more than $2.7 million was invested in research grants at the UConn Health Center and the Yale University School of Medicine. The national 50-state network of chapters also devoted $159 million to programs and services that assisted more than one million people.
Sylvia Lawry passed away Feb. 24, 2001, leaving behind a lasting legacy of tireless work. For more than 50 years she built the Society brick-by-brick and was the glue that held it all together, leaving a sturdy foundation for the National MS Society to stand on and move forward into the future.
Connecticut Chapter History
The Connecticut Chapter was organized by Georgina Davids, a Connecticut native who lived with MS. She was commissioner of welfare for the state of Connecticut, and solicited the support of Nancy Carnegie Rockefeller, wife of James Stillman Rockefeller, to help get the Connecticut Chapter off the ground.
At the local level, 60 percent of funds raised went toward local programs supporting those living with MS, while the other 40 percent went to National to help fund research. In September 1948, Yale was among the first few hospitals to open an MS clinic. The first MS support groups were also started by the Connecticut Chapter.
By 1961, two additional chapters were chartered in Connecticut: the Northeastern Connecticut Chapter and the Greater Hartford Chapter. Further expansion occurred in 1977 when the Connecticut River Valley Chapter was born. This chapter served all of Central Connecticut and north to the Vermont border.
In 1985 the northern chapters merged to become the Greater Connecticut Chapter. The Greater Connecticut Chapter produced a newsletter called GEMS- Gathering to Eliminate Multiple Sclerosis. It was created using a type-writer. There were no pictures. This newsletter is now known as MS Connection.
In 1987, in collaboration with the Massachusetts Chapter, the Greater Connecticut Chapter launched MS Vacation Week, which was, as it is today, located at Easter Seals’ Camp Hemlocks in Hebron. Current National MS Society CEO Cyndi Zagieboylo then served on the staff of the Massachusetts Chapter and played a vital role in the programs’ birth.
The Connecticut Chapter hosted its first Bike MS event in 1988 at Griffin Center in Windsor. The following year, Hartford was one of the first sites to host a “Super Cities Walk” for MS. This event was the foundation for the now nationwide Walk MS fundraising event.
The positive momentum stalled in the early 1990’s as the Connecticut chapters faced financial hardships. The beloved MS Vacation Week was cut. The chapter experienced monumental challenges in efforts to fundraise. At one point, the future of the chapter was in question. At the time, the Greater Connecticut Chapter consisted of an administrative assistant, a fundraiser and programs director, Susan Raimondo, who is still with the Connecticut Chapter. In 1994 the National MS Society hired Lisa Gerrol to serve as President of the Greater Connecticut Chapter. The chapter up to then had only raised at the most $500,000 in a single year. Upon accepting the leadership position, Gerrol was assigned to raise $1 million by 2004.
“At the end of my first few days here I realized the tremendous challenge I had taken on,” said Gerrol, who has led the way for more than 17 years. “However, I also knew Rome wasn’t built in a day. I knew it was just a matter of chipping away day by day and year by year.”
In 1997, long before her assigned goal, the Connecticut Chapter raised $1 million for the first time.
“The tenfold growth across the board under Lisa’s leadership is astonishing,” said Jack Betkoski, Connecticut Chapter Board Chair. “The staff has grown from three to 30. In 1997 Bike MS raised $50,000 annually and now it raises more than $500,000. Back then, Walk MS raised $140,000 and this year it raised $1.36 million. The Connecticut Chapter’s overall budget has gone from $500,000 to nearly $5 million. By any standards, this is impressive.”
The growth has enabled the chapter to offer increasingly robust programs to those it serves. The chapter provides critically needed financial assistance and care management programs, as well as an expanding college scholarship program funded by the Hayley’s Hope and Michaela’s Miracle MS Memorial Fund, which in its first year awarded one scholarship and this year awarded 10.
In 2007 the Greater Connecticut Chapter and Western Connecticut Chapter merged to become the National MS Society, Connecticut Chapter. Soon after, through a generous gift from Andy and Joyce Mandell, the chapter donated $1 million to Saint Francis Hospital and Medical Center to establish the Mandell Center for Comprehensive Multiple Sclerosis Care and Neuroscience Research, offering comprehensive treatment to address the full continuum of care.
“The expansion in fundraising has helped in the creation of greater care outlets for people with MS,” said Gerrol. “The next initiative for the Connecticut Chapter includes establishing housing for people with MS, particularly young people who can’t find appropriate housing and are currently forced to live in nursing homes.”
The Connecticut Chapter maintains a satellite office in Norwalk and will continue to increase its presence throughout Fairfield County. Today’s MS fundraising has expanded beyond Walk MS and Bike MS. The Connecticut Chapter now hosts a roster of more than 14 events each year.
Moving forward the Connecticut Chapter will continue to offer abundant programs and services, provide education, resources and referrals, maintain a strong advocacy presence and above all, continue to fund research toward a cure.