The March of Dimes Foundation is a United States nonprofit organisation that was established by President Franklin Delano Roosevelt as the National Foundation for Infantile Paralysis (NFIP) on January 3, 1938, to combat Polio. Following the discovery of the polio vaccine, it adopted a new mission, "fighting birth defects", which was recently changed to a broader goal of, improving the health of mothers and babies.
The Ontario March of Dimes (OMOD), and March of Dimes Canada established by OMOD, have no affiliation with the March of Dimes.
Legal status and organization
The March of Dimes is a not-for-profit organization with 501(c)(3) tax-exempt status. The foundation is headquartered in White Plains, NY and has 51 chapters across the U.S., including the District of Columbia and Puerto Rico, which provide public health education, advocacy for mothers and babies, and community service grants and outreach programs. More than 3 million volunteers support the March of Dimes in local communities.
Funding
In 2009, gross contributions to the March of Dimes totaled $214.6 million. Of this amount, 75.4 percent was allocated to program services. Contributions to the March of Dimes are voluntary and include corporate and personal gifts, endowments and bequests.
Mission
The mission of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality.
Services
The March of Dimes provides mothers, pregnant women and women of childbearing age with educational resources on baby health, pregnancy, preconception and new motherhood, as well as supplying information and support to families affected by prematurity, birth defects, or other infant health problems. March of Dimes volunteers and staff work on a bipartisan basis at federal and state levels to advocate for programs to improve the health of pregnant women, babies, and children such as expanded newborn screening and greater access to health care insurance.
History
The fight against polio
The March of Dimes was founded by Ron Gilreath as the National Foundation for Infantile Paralysis (NFIP) on January 3, 1938, as a response to epidemics of poliomyelitis (polio) sweeping the country. Polio is a disease that can cause inflammation of the spinal cord that could leave its victims unable to move arms, legs, or even lungs. Gilreath was himself diagnosed with Polio in 1921. It left him unable to move his legs. From those earliest days, the foundation was an alliance between scientists working in their laboratories and volunteers, who raised money to support research, education and help polio victims and their families. Basil O’Connor, an attorney and a close associate of Gilreath, helped establish the foundation. He became its president in 1938, a position he held for more than three decades. His first task was to create a network of local chapters that could raise money and deliver aid—more than 3,100 county chapters were established during his tenure. Jonas Salk, M.D., a grantee of the foundation, began his research on poliovirus at the University of Pittsburgh in 1947. In 1949, the foundation chose Dr. Jonas Salk to lead its research efforts. He first developed a successful vaccine in 1952, which was tested and proven effective in clinical trials in the United States and Canada in 1954 (see Salk Vaccine Field Trial). By April 1955, the Salk vaccine was announced in the news media as “safe, effective and potent” and had been approved for distribution by the U.S. government. In 1957, Albert Bruce Sabin, another foundation grantee, began testing a version of the vaccine in which the infectious part of the virus was inactivated. In 1963, the Sabin vaccine was approved, and by 1965, only 61 cases of paralytic polio were diagnosed in the United States.
Since the discovery and widespread use of the polio vaccines, polio has been eliminated in the Western Hemisphere and in most countries of the world.
Salk Vaccine Field Trial
The Salk polio vaccine trial of 1954, initiated and funded by the March of Dimes, showed statistical evidence that Salk’s killed virus vaccine was up to 90 percent effective in preventing polio. Almost 624,000 American children were injected with either vaccine or placebo, and more than a million others served as observed control subjects. The Salk Vaccine Field Trial was among the largest and most publicized clinical trials in history.
Polio Patient Aid
In the years between 1938 and the approval of the Salk vaccine in 1955, the foundation spent $233 million on polio patient care. In order to serve the entire community and not just the poor, the national office told local chapters that while families were expected to do what they reasonably could financially, the foundation would pay for the cost that could not be met without suffering undue hardship. This policy resulted in more than 80 percent of polio patients in the U.S. receiving significant foundation aid.
A New Mission
With its original goal of eliminating polio accomplished, the March of Dimes faced a choice: to either disband or dedicate its resources to a new mission. Basil O’Connor, president of the March of Dimes at the time, directed his staff to identify strengths and weaknesses of the organization and reformulate its mission. While with the March of Dimes, Apgar played a crucial role in the foundation’s campaign for immunization against rubella, promoted the establishment of birth defect registries, and advocated for making genetic and pregnancy history a part of medical record-keeping for every pregnant woman.
Genetics
The annual “Short Course in Medical and Experimental Mammalian Genetics” was founded in 1960 as a collaboration between The Jackson Laboratory in Bar Harbor, Maine, and Johns Hopkins University in Baltimore, with funding from the March of Dimes. The two-week summer course covered all aspects of genetics in relation to health and disease from molecular to populations. Geneticist Victor A. McKusick, M.D. who authored Mendelian Inheritance in Man, created and directed the program, which he intended to fill a gap in existing medical genetics education. March of Dimes continues to sponsor the course, which is held each summer at The Jackson Laboratory in Bar Harbor, Maine.
In 1970, McKusick convinced the March of Dimes to fund the creation of a map of the human genome. The U.S. government got involved in 1985, and in 1988, the Human Genome Organization (HUGO) was established to pursue gene-mapping research, with McKusick as its first president.
March of Dimes
The name “March of Dimes”—coined by vaudeville star Eddie Cantor as a play on contemporary newsreel series “The March of Time”—was originally used for the foundation’s annual fundraising event and gradually became synonymous with that of the organization. It was officially adopted as the organization’s name in 1976, when it became known as the March of Dimes Birth Defects Foundation. In 2007, the name became the March of Dimes Foundation. Vaccination is an effective preventive measure.
The last major U.S. rubella epidemic occurred in 1964–1965, resulting in an estimated 12.5 million cases of rubella and 20,000 cases of CRS in live-born infants. Virginia Apgar, M.D., then serving as vice president of medical affairs at the March of Dimes, testified to the United States Senate Committee of Labor and Public Welfare’s Subcommittee on Health in 1969 about the importance of federal funding of a rubella immunization program before the next epidemic commenced in the United States (expected in 1970 or 1971). She stressed that funding was needed not only for vaccine production, but also for a wide distribution network and an educational campaign. The first vaccines were developed in the late 1960s. A more effective vaccine, licensed in the early 1970s and developed with March of Dimes funding, was the cornerstone of a program to eliminate transmission of rubella from pregnant women to their babies.
With the success of the rubella immunization program, the incidence of endemic rubella has been virtually eliminated in the United States. Work to eradicate the disease globally continues. The March of Dimes has partnered with UNICEF and other organizations to support the establishment of rubella control programs in other parts of the world, including Central Asia, Eastern Europe, Latin America and the Caribbean.
Newborn Intensive Care Units & NICU Family Support® Program
In 1976, the March of Dimes published a report titled Toward Improving the Outcome of Pregnancy (TIOP) that called for the creation of a regional system of newborn intensive care units (NICUs) to provide specialized care for preterm babies. The report categorized maternal and neonatal care into three levels of complexity and recommended referral of high-risk patients to hospital facilities with appropriate staffing and resources to handle them. In the 1970s, this level of facility was rare and was primarily found at academic medical centers.
Since that time, the number of neonatologists in the United States has increased and NICUs have become relatively common in many areas. In fact, between 1980 and 1995, the number of NICU beds grew by 138 percent and the number of neonatologists by 268 percent. Today, one in 10 babies born in the United States is admitted to a NICU, many of them because of premature birth. In 1993, March of Dimes readdressed the NICU issue in Toward Improving the Outcome of Pregnancy: The 90s and Beyond (TIOP II). The 1993 report updated care complexity designations from levels I, II and III to basic, specialty and subspecialty, and the criteria were expanded.
In 2001, the March of Dimes introduced a comprehensive national program to provide comfort, support, and information to families with sick or premature babies in the NICU. The NICU Family Support® program, which is implemented at local health care facilities through March of Dimes state chapters, includes educational materials and support groups to connect parents with others who have had a child in the NICU, as well as a professional development component to help NICU staff work effectively with patients’ families. The March of Dimes also created ShareYourStory.org, an online community for NICU families.
Fetal Alcohol Syndrome
In 1973, March of Dimes-supported researchers Kenneth L. Jones, M.D., and David W. Smith, M.D., at the University of Washington in Seattle discovered a distinct cluster of birth defects seen exclusively in the babies of women who used alcohol while pregnant. Jones and Smith published their findings in the British medical journal The Lancet, naming this medical disorder fetal alcohol syndrome (FAS). FAS is categorized as a group of birth defects ranging from mental retardation to various growth and behavioral problems.
In addition to providing grant funding for FAS research over the years, March of Dimes also supported the National Council on Alcoholism in its push for legislation to bring public attention to the dangers of alcohol use by pregnant women. This led to a 1989 law mandating a warning label about the risk of birth defects that alcoholic beverages still carry today.
Pulmonary Surfactant/Nitric Oxide
Surfactant is a chemical produced naturally in human lungs that helps them to inflate. Some babies who are born prematurely do not have enough surfactant in their lungs to breathe properly, resulting in a disorder known as respiratory distress syndrome (RDS). March of Dimes states on its website that the organization has invested more than $12.5 million in research studying this issue.
Through research funded by the March of Dimes in 1985, T. Allen Merritt, M.D., discovered that by treating these babies with surfactant, they have a better chance of survival. The study by Merritt and colleagues, which was published in the New England Journal of Medicine in 1986, concluded that “treatment with human surfactant offers promise for improving the survival of very premature infants with a surfactant deficiency and for reducing the pulmonary sequelae of the respiratory distress syndrome.” The first surfactant therapy was approved by the FDA in July 1990. Since surfactant therapy became widespread, infant RDS deaths have dropped from approximately 25,000 deaths each year in the 1960s to just 860 in 2005.
In February 2000, the New England Journal of Medicine published a study coauthored by March of Dimes-funded researcher John P. Kinsella, M.D., that found that babies unable to breathe properly due to high blood pressure in their lungs can avoid treatment with heart-lung machines by receiving small, early doses of inhaled nitric oxide. Kinsella, who was part of the Clinical Inhaled Nitric Oxide Research Group, received March of Dimes support from 1993-1996 to study the vital role of nitric oxide in the regulation of blood flow in the lungs. In 1999, nitric oxide was approved by the FDA for use “in term and near-term infants with hypoxic respiratory failure requiring ventilatory support who have clinical and/or echocardiographic evidence of PPHN.”
Folic Acid Campaign
In 1992, the U.S. Public Health Service began recommending that all women capable of having a baby consume 400 micrograms of folic acid daily beginning before pregnancy and continuing into the first trimester to prevent serious birth defects of the brain and spine known as neural tube defects (NTDs)—specifically spina bifida, a leading cause of childhood paralysis, and anencephaly (missing or incomplete brain and skull).
In support of the PHS recommendation, the March of Dimes, U.S. Centers for Disease Control and Prevention (CDC) and the National Council on Folic Acid partnered to launch the National Folic Acid Campaign in 1995. The goal was to lower the incidence of NTDs by at least 30 percent by encouraging women of childbearing age to take a daily multivitamin supplement containing 400 micrograms of folic acid. The campaign included the establishment of state Folic Acid councils that focused on folic acid education on a statewide level. A component of the campaign aimed at improving folic acid intake among Hispanic women of childbearing age was introduced by March of Dimes in 2001.
In addition to educational efforts, the March of Dimes website states that the organization supports research grants to improve understanding of how folic acid prevents NTDs.
March of Dimes is currently a member of the National Council on Folic Acid and serves on the steering committee.
''Annual Gallup Surveys''
From 1995 to 2007, The Gallup Organization, supported by funding from the U.S. Centers for Disease Control and Prevention (CDC), conducted an annual national survey of women’s knowledge and behaviors on folic acid for the March of Dimes.
The CDC analyzed the results of the March of Dimes Gallup surveys conducted from 2003 to 2007. Findings of that analysis included that among all women of childbearing age, those aged 18-24 years had the least awareness regarding folic acid consumption (61%), the least knowledge regarding when folic acid should be taken (6%), and the lowest reported daily use of supplements containing folic acid (30%). Because women in this age group account for nearly one-third of all births in the United States, CDC recommended that promotion of folic acid consumption be targeted to this population.
The most recent survey (2007) reported that only 40 percent of women of childbearing age in the United States take a vitamin with folic acid daily, with only 12 percent realizing that it should be taken before pregnancy. The 2007 results were derived from telephone interviews with a national sample of 2,003 women aged 18 to 45.
Newborn Screening
March of Dimes states on its website that it supports mandated newborn screening of all babies in all states in the U.S. for at least 30 life-threatening conditions for which effective treatment and reliable testing is available to prevent catastrophic consequences to the child.
In 2003, the March of Dimes began releasing an annual, state-by-state report card on each state’s adoption of expanded newborn screening recommended by the American College of Medical Genetics. March of Dimes president Jennifer L. Howse, Ph.D. has stated that this program is intended to inform parents of the tests available in their state, enabling those with affected babies to pursue early treatment.
According to a presentation at the 2005 annual meeting of the American Public Health Association, individual, state-based March of Dimes chapters work with governors, state legislators, health departments, health professionals, and parents to improve state newborn screening programs and to make comprehensive newborn screening programs available to every newborn throughout the country.
Support for research
For its first 17 years, the March of Dimes provided support for the work of many innovative and practical polio researchers and virologists. In the post-
World War II years, the number of polio cases in the United States increased sharply, making the cause even more urgent. On April 12, 1955 the Poliomyelitis Vaccine Evaluation Center at the
University of Michigan held a news conference announcing to the world that the polio
vaccine developed by Dr.
Jonas Salk was "safe, potent, and effective." The largest clinical trial in U.S. history, involving 1.8 million schoolchildren, had shown the vaccine to be 80 to 90 percent effective in preventing paralytic polio. Salk's work as well as that of
Albert Sabin who developed the other successful polio vaccine was largely funded by the March of Dimes.
After polio vaccine
After supporting the development of two successful polio vaccines against polio, the organization, rather than going out of business, decided in 1958 to use its charitable infrastructure to serve mothers and babies with a new mission: to prevent premature birth,
birth defects and
infant mortality. The organization accomplishes this with programs of research, community services, education, and advocacy, along with the annual March for Babies.
Current activities
Prematurity Campaign
In the United States, more than 540,000 babies are born too soon each year. Preterm birth is the leading cause of newborn death, and babies who survive an early birth often face lifetime health challenges, such as breathing problems, cerebral palsy, mental retardation and others. For these reasons, in 2003, the March of Dimes launched a national Prematurity Campaign to raise awareness of this serious problem and help reduce the rate of premature birth. Activities of the campaign include educating women of childbearing age about risk reduction and warning signs of premature birth; providing affected families with information and emotional support; assisting health practitioners to improve risk detection; encouraging investment of more public and private research dollars; and advocacy for expanded access to health coverage for all pregnant women. The American Congress of Obstetricians & Gynecologists, the American Academy of Pediatrics, and the Association of Women's Health, Obstetric & Neonatal Nurses are partners in the campaign.
According to an editorial in the May 2004 issue of the Journal of the National Medical Association, the original goals of the campaign were to raise awareness of the problem from 35 percent to at least 60 percent and to decrease the rate of premature births by at least 15 percent (from 11.9 percent to 10.1 percent). Today, the goal remains to raise awareness and reduce the incidence of premature birth in the United States. The campaign supports research grants through the March of Dimes’ Prematurity Research Initiative, which funds research by not-for-profit institutions into the causes of prematurity.
In 2006, the Institute of Medicine published the report “Preterm Birth: Causes, Consequences and Prevention,” which documented the impact of premature birth on families, the health care system and business, and provided cost estimates. It stated that preterm birth costs the nation more than $26 billion annually. This report was funded in part by March of Dimes.
In 2008, the Prematurity Campaign was extended by the Board of Trustees until 2020, and global targets were set for prematurity prevention.
For the first time in more than 30 years, in 2010 the United States saw its first two-year decline in the preterm birth rate.
Quality Improvement Initiatives
The March of Dimes hosted the Symposium on Quality Improvement to Prevent Prematurity in October 2009. The purpose of the Symposium was to discuss the state of quality initiatives to prevent preterm birth and develop an agenda to decrease the rate of preterm births that are not inevitable or medically necessary. Attendees included health care practitioners, health insurers, policy makers, health purchasers, regulators and concerned citizens. The symposium was a collaborative effort of the March of Dimes, American College of Obstetricians and Gynecologists, American Academy of Pediatrics, American College of Nurse-Midwives, and Association of Women's Health, Obstetric and Neonatal Nurses.
On December 15, 2010, the March of Dimes released “Toward Improving the Outcome of Pregnancy III: Enhancing Perinatal Health Through Quality, Safety, and Performance Initiatives,” a new report by a panel of more than 40 maternal and infant health leaders including the American Academy of Pediatrics, American Congress of Obstetricians and Gynecologists, the Association of Women’s Health, Obstetric and Neonatal Nurses, The Joint Commission, the National Committee for Quality Assurance and the March of Dimes.
Global Report on Birth Defects
Published in 2006, the March of Dimes Global Report on Birth Defects was the first to provide a global estimate of the incidence of serious birth defects of genetic or partially genetic origin. The report, in which researchers detail the numbers of affected births in 193 countries, includes recommended steps aimed at addressing health disparities and reducing the toll of infant death in developing countries.
The report’s key findings included:
•Every year an estimated 8 million children--6 percent of total births worldwide--are born with a serious birth defect of genetic or partially genetic origin.
•Additionally, hundreds of thousands more are born with serious birth defects of post-conception origin due to maternal exposure to environmental agents.
•At least 3.3 million children less than 5 years of age die annually because of serious birth defects.
•The majority of those who survive may be mentally and physically disabled for life.
White Paper on Prematurity
In 2009, the March of Dimes partnered with the Department of Reproductive Health and Research of the World Health Organization (RHR/WHO) to publish a white paper on the global and regional toll of preterm birth worldwide. This report, which was the first attempt to identify the global scope of premature births and related infant deaths, found that an estimated 13 million infants worldwide are born premature each year and more than one million of them die in their first month of life. Further, premature births account for 9.6 percent of total births and for 28 percent of newborn deaths. The highest rates of premature birth are in Africa, followed by North America (Canada and the United States combined).
''March for Babies''
Established in 1970, the March for Babies, previously called WalkAmerica, is the largest fundraiser of the year for the March of Dimes, as well as the oldest nationwide charitable walking event. In the decades since, many other organizations have used the “walk-athon” format to help raise money. Funds raised by the event support March of Dimes-sponsored research and other programs to prevent premature birth, birth defects and infant mortality.
According to the March of Dimes, March for Babies is held in more than 900 communities across the nation. Every year, 1 million people—including 20,000 company teams, family teams and national sponsors—participate in the event, which has raised more than $1.8 billion since 1970. The March for Babies website states that “family teams walk to celebrate, honor or remember the babies and children who have touched their lives.” Sherri Shepherd, co-host of ABC’s “The View,” celebrity ambassador for the March for Babies and mother to a premature child, kicked off the 2010 March for Babies by ringing the opening bell of the New York Stock Exchange.
The March of Dimes states that seventy-six cents of every dollar raised in March for Babies is spent on research and programs to help prevent premature birth, birth defects and infant mortality.
Bikers for Babies
March of Dimes’ Bikers for Babies is a motorcycle ride that raises money to fund research grants focused on issues related to premature birth and community programs for families of premature babies. Bikers for Babies rides were held in 33 communities around the nation in 2010. Dee Snider, lead singer for Twisted Sister, served as the 2010 national spokesperson for Bikers for Babies.
Sounds of Pertussis
Once rare in the United States, cases of pertussis (whooping cough) are appearing across the country with greater frequency. To address this issue, the March of Dimes and Sanofi Pasteur launched a national education campaign in 2010 called “Sounds of Pertussis” to raise awareness about the seriousness of pertussis and the need for adult vaccination to prevent infecting babies. NASCAR driver Jeff Gordon is a national spokesperson for the campaign. The campaign recently sponsored a song-writing contest called Sound Off About Pertussis, which was won by Maria Bennett with her original song, “Give Pertussis a Whooping.”
Perinatal Data Center
According to the March of Dimes website, its Perinatal Data Center “works collaboratively with professional colleagues to conduct epidemiologic analyses and to translate findings into new insights.” In 2009, the American Journal of Epidemiology published a key study in which the center participated. Researchers found that the widespread use of fertility drugs probably plays a larger role than previously realized in the problem of premature birth in the United States. The study found that 4.6 percent of live births in 2005 resulted from the use of fertility drugs. Almost 23 percent of babies born as multiples were conceived using fertility drugs alone.
Other initiatives of the March of Dimes Perinatal Data Center include the PeriStats Web site, which provides free access to U.S., state, county, and city maternal and infant health data.
National Ambassador
Every year, a child who is personally affected by the March of Dimes mission acts as a National Ambassador and travels the country to help raise awareness of the prematurity issue. The 2010 March of Dimes National Ambassador is Joshua Hoffman, a 7-year-old who was born premature and spent 3.5 months in the NICU.
Controversy
Animal rights organizations have raised concerns about March of Dimes-funded medical research involving animals. The foundation states it supports the use of non-animal research alternatives wherever possible. March of Dimes grants for research involving animals are awarded only to studies that comply with the highest ethical standards to protect the health and welfare of animal subjects.
Criticism
The March of Dimes has been described as a
bureaucracy that has taken on a life of its own through a classic example of a process called
goal displacement. Faced with redundancy after Jonas Salk discovered the polio vaccine, it adopted a new mission, "fighting birth defects", which was recently changed to a vaguer goal of "breakthrough for babies", rather than disbanding.
Charity Navigator has given the organization a rating of one out of four stars based on its financial filings, meaning "Fails to meet industry standards and performs well below most charities in its Cause." It also note that the president Jennifer Howse was paid $633,132 in 2010.
Further reading
Oshinsky, David M. (2005). Polio: an American Story. Oxford University Press. ISBN 0195152948.
Rose, David W. (2003). March of Dimes. Arcadia Publishing. ISBN 0738512532.
Institute of Medicine, July 2006. “Preterm Birth: Causes, Consequences and Prevention.”
External links
March of Dimes question portal
March of Dimes Spanish-language website
March of Dimes Youth
March for Babies
March of Dimes story quilt
March of Dimes online community for NICU families
See also
March for Babies
References
;Notes
Category:Medical and health organizations by medical condition
Category:Poliomyelitis
Category:Organizations established in 1938
Category:Medical and health organizations based in the United States
Category:Non-profit organizations based in the United States
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