The International Ventilator Users Network (IVUN) is a

nonprofit A nonprofit organization (NPO) or non-profit organisation, also known as a non-business entity, not-for-profit organization, or nonprofit institution, is a legal entity organized and operated for a collective, public or social benefit, in co ...

network of

mechanical ventilation Mechanical ventilation, assisted ventilation or intermittent mandatory ventilation (IMV), is the medical term for using a machine called a ventilator to fully or partially provide artificial ventilation. Mechanical ventilation helps move air ...

users, respiratory health professionals, and ventilatory equipment manufacturers. Its focus is on the health and

independent living Independent living (IL), as seen by its advocates, is a philosophy, a way of looking at society and disability, and a worldwide movement of disabled people working for equal opportunities, self-determination, and self-respect. In the context o ...

of ventilator users, whether they are using assisted ventilation long-term – at home or in nursing facilities—or short-term in emergency rooms and critical care units. Many ventilator users have neuromuscular conditions, such as respiratory

polio Poliomyelitis, commonly shortened to polio, is an infectious disease caused by the poliovirus. Approximately 70% of cases are asymptomatic; mild symptoms which can occur include sore throat and fever; in a proportion of cases more severe s ...

post-polio syndrome Post-polio syndrome (PPS, poliomyelitis sequelae) is a group of latent symptoms of poliomyelitis (polio), occurring at about a 25–40% rate (latest data greater than 80%). These symptoms are caused by the damaging effects of the viral infection ...

amyotrophic lateral sclerosis Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND) or Lou Gehrig's disease, is a neurodegenerative disease that results in the progressive loss of motor neurons that control voluntary muscles. ALS is the most comm ...

(ALS),

muscular dystrophy Muscular dystrophies (MD) are a genetically and clinically heterogeneous group of rare neuromuscular diseases that cause progressive weakness and breakdown of skeletal muscles over time. The disorders differ as to which muscles are primarily affe ...

spinal muscular atrophy Spinal muscular atrophy (SMA) is a rare neuromuscular disorder that results in the loss of motor neurons and progressive muscle wasting. It is usually diagnosed in infancy or early childhood and if left untreated it is the most common genetic ...

(SMA),

spinal cord injury A spinal cord injury (SCI) is damage to the spinal cord that causes temporary or permanent changes in its function. Symptoms may include loss of muscle function, sensation, or autonomic function in the parts of the body served by the spinal cor ...

(SCI), or

congenital central hypoventilation syndrome Central hypoventilation syndrome (CHS) is a sleep-related breathing disorder that causes ineffective breathing, apnea, or respiratory arrest during sleep (and during wakefulness in severe cases). CHS can either be congenital (CCHS) or acquired ( ...

(CCHS). Historically, IVUN's efforts have been primarily addressed to ventilator users with neuromuscular conditions. But people who have

chronic obstructive pulmonary disease Chronic obstructive pulmonary disease (COPD) is a type of progressive lung disease characterized by long-term respiratory symptoms and airflow limitation. The main symptoms include shortness of breath and a cough, which may or may not produce ...

(COPD) or

obesity hypoventilation syndrome Obesity hypoventilation syndrome (OHS) is a condition in which severely overweight people fail to breathe rapidly or deeply enough, resulting in low oxygen levels and high blood carbon dioxide (CO2) levels. The syndrome is often associated with ...

may also need to use assisted ventilation.

Mission

IVUN's mission is “to enhance the lives and independence” of ventilator users “through education, advocacy, research, and networking” among ventilator uses, respiratory health professionals, and ventilatory equipment manufacturers. Support comes from individual members, donors, and sponsors. IVUN's parent organization is

Post-Polio Health International Post-Polio Health International (PHI) is a relatively new name for a non-profit organization that officially began its work in 1960. For many years it was known in medical, rehabilitation, and disability circles variously as GINI, or the Internation ...

(PHI). It shares that organization's headquarters and staff in

St. Louis, Missouri St. Louis () is the second-largest city in Missouri, United States. It sits near the confluence of the Mississippi River, Mississippi and the Missouri Rivers. In 2020, the city proper had a population of 301,578, while the Greater St. Louis, ...

, as well as its volunteer Board of Directors. IVUN's publications, website, and volunteer advisory boards are its own, however.

Current activities

Education

IVUN publishes (both online and in print) authoritative medical information based on interaction between ventilator users and healthcare professionals. Currently, users can find online free of charge a 16-page introductory document describing the history of ventilators, the various types of ventilators, and the types of user-interfaces; a packet of documents dealing with emergency medical care for home ventilator users (checklists for users, caregivers, physicians, and

Emergency medical services Emergency medical services (EMS), also known as ambulance services or paramedic services, are emergency services that provide urgent pre-hospital treatment and stabilisation for serious illness and injuries and transport to definitive care. ...

personnel); and a comprehensive Home Ventilator Guide which provides technical information on home/portable ventilator equipment from manufacturers worldwide. Past issues of IVUN's quarterly newsletter, ''Ventilator-Assisted Living'', are also online. IVUN's staff maintain a telephone answer-line and answer e-mail inquiries during business hours.

Networking

IVUN publishes, and makes available free online, the ''Resource Directory for Ventilator-Assisted Living'', which lists respiratory health professionals who are experts in long-term assisted ventilation, ventilatory equipment manufacturers and their contact information, and organizations whose members use assisted ventilation. IVUN's website manages an equipment exchange, a peer-to-peer advice page, and ventilator news digests. IVUN staff regularly attend medical meetings and international conferences on home ventilator use, and coordinate presentations by ventilator users at medical meetings such as those for the

American College of Chest Physicians The American College of Chest Physicians (CHEST) is a medical association in the United States consisting of physicians and non-physician specialists in the field of chest medicine, which includes pulmonology, critical care medicine, and sleep med ...

(ACCP). In addition, IVUN/PHI's periodic international conferences present many sessions relevant to ventilator users.

Advocacy and Research

With respect to advocacy and research, IVUN's activities are integrated with those of PHI. A recent research grant of direct relevance to ventilator users is a study, conducted in 2005 by a team at

Johns Hopkins University Johns Hopkins University (Johns Hopkins, Hopkins, or JHU) is a private university, private research university in Baltimore, Maryland. Founded in 1876, Johns Hopkins is the oldest research university in the United States and in the western hem ...

, on the “Timing of Noninvasive Ventilation for Patients with Amyotrophic Lateral Sclerosis.” An earlier research award (2001) went to researchers at the

University of Toronto The University of Toronto (UToronto or U of T) is a public research university in Toronto, Ontario, Canada, located on the grounds that surround Queen's Park. It was founded by royal charter in 1827 as King's College, the first institution ...

Canada Canada is a country in North America. Its ten provinces and three territories extend from the Atlantic Ocean to the Pacific Ocean and northward into the Arctic Ocean, covering over , making it the world's second-largest country by tot ...

for a study on ”Ventilator Users' Perspectives on the Important Elements of Health-Related Quality of Life.”http://www.ventusers.org/res/index.html Research Awards

History

IVUN was formally established under that name in 1987, but its roots go back to the polio epidemics of the 1940s and 1950s, when the possibility of long-term survival with mechanically assisted ventilation became a reality. Beginning in 1949, IVUN's founder,

Gini Laurie Virginia Grace Wilson "Gini" Laurie (June 10, 1913 – June 28, 1989) was a central figure in the 20th century development, in the United States, of the independent living movement for people with disabilities. It is sometimes said that she was ...

, was an

American Red Cross The American Red Cross (ARC), also known as the American National Red Cross, is a non-profit humanitarian organization that provides emergency assistance, disaster relief, and disaster preparedness education in the United States. It is the desi ...

volunteer in the polio wards of Cleveland's City Hospital, and later in the part of that hospital (Toomey Pavilion) that became one of the 15 respiratory care and rehabilitation hospitals funded by the

March of Dimes March of Dimes is a United States nonprofit organization that works to improve the health of mothers and babies. The organization was founded by President Franklin D. Roosevelt in 1938, as the National Foundation for Infantile Paralysis, to comba ...

. Those centers all across the country began to close after the polio epidemics in the

United States The United States of America (U.S.A. or USA), commonly known as the United States (U.S. or US) or America, is a country primarily located in North America. It consists of 50 states, a federal district, five major unincorporated territorie ...

ended. Laurie, however, was determined to keep the respiratory polio survivors in touch with each other, and with their medical specialists. She did this first by taking over the editorship of Toomey Pavilion's alumni newsletter, the ''Toomeyville Jr. Gazette'', and circulating it widely throughout the United States. Copies also went to individuals and organizations in

Great Britain Great Britain is an island in the North Atlantic Ocean off the northwest coast of continental Europe. With an area of , it is the largest of the British Isles, the largest European island and the ninth-largest island in the world. It is ...

Europe Europe is a large peninsula conventionally considered a continent in its own right because of its great physical size and the weight of its history and traditions. Europe is also considered a Continent#Subcontinents, subcontinent of Eurasia ...

, and

Australia Australia, officially the Commonwealth of Australia, is a Sovereign state, sovereign country comprising the mainland of the Australia (continent), Australian continent, the island of Tasmania, and numerous List of islands of Australia, sma ...

. In 1960, her informal organization of volunteers was incorporated under the name Iron Lung Polio Assistance, and her newsletter grew into a magazine called the ''Toomey j. Gazette''. In 1964, the organization changed its name to Iron Lung Polios and Multiplegics, to reflect more accurately Laurie's cross-disability concerns. The magazine became the ''Rehabilitation Gazette'' in 1970, carrying a wide range of articles on

for people with physical disabilities. Laurie soon became one of the central figures in the development of the

independent living movement Independent living (IL), as seen by its advocates, is a philosophy, a way of looking at society and disability, and a worldwide movement of disabled people working for Equal opportunity, equal opportunities, self-determination, and self-respect. ...

and in the founding of the

Centers for Independent Living Independent living (IL), as seen by its advocates, is a philosophy, a way of looking at society and disability, and a worldwide movement of disabled people working for equal opportunities, self-determination, and self-respect. In the context o ...

in the United States. Laurie's central concerns, however, always included ventilator users. Specifically, they concerned finding ways for ventilator users to leave hospitals and nursing homes with the support necessary for them to live active, effective lives as members of their communities. As some cross-disability organizations such as the

American Coalition of Citizens with Disabilities The American Coalition of Citizens with Disabilities (ACCD) was, in the mid-1970s to early 1980s, a national consumer-led disability rights organization called, by nationally syndicated columnist Jack Anderson and others, "the handicapped lobby". ...

(ACCD) dissolved into disability-specific organizations, IVUN was formed to make sure there were publications and networks specifically for long-term ventilator users.

References

{{Authority control International medical and health organizations