Cystic fibrosis (CF) is a rare genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine. The hallmark feature of CF is the accumulation of thick mucus in different organs. Long-term issues include difficulty breathing and coughing up mucus as a result of frequent lung infections. Other signs and symptoms may include sinus infections, poor growth, fatty stool, clubbing of the fingers and toes, and infertility in most males. Different people may have different degrees of symptoms.
An orphan drug is a pharmaceutical agent that is developed to treat certain rare medical conditions. An orphan drug would not be profitable to produce without government assistance, due to the small population of patients affected by the conditions. The conditions that orphan drugs are used to treat are referred to as orphan diseases. The assignment of orphan status to a disease and to drugs developed to treat it is a matter of public policy that depends on the legislation of the country.
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 combat polio. The name "March of Dimes" was coined by Eddie Cantor. After funding Jonas Salk's polio vaccine, the organization expanded its focus to the prevention of birth defects and infant mortality. In 2005, as preterm birth emerged as the leading cause of death for children worldwide, research and prevention of premature birth became the organization's primary focus.
Fundraising or fund-raising is the process of seeking and gathering voluntary financial contributions by engaging individuals, businesses, charitable foundations, or governmental agencies. Although fundraising typically refers to efforts to gather money for non-profit organizations, it is sometimes used to refer to the identification and solicitation of investors or other sources of capital for for-profit enterprises.
The Cystic Fibrosis Trust is a UK-based national charity founded in 1964, dealing with all aspects of cystic fibrosis (CF). It funds research to treat and cure CF and aims to ensure appropriate clinical care and support for people with cystic fibrosis.
Vertex Pharmaceuticals is an American biopharmaceutical company based in Boston, Massachusetts. It was one of the first biotech firms to use an explicit strategy of rational drug design rather than combinatorial chemistry. It maintains headquarters in South Boston, Massachusetts, and three research facilities, in San Diego, California, and Milton Park, Oxfordshire, England.
Delta Phi Epsilon is an international sorority founded on March 17, 1917 at New York University Law School in Manhattan. It is one of 26 social sororities that form the National Panhellenic Conference (NPC). It has 110 active chapters, three of which are located in Canada, making the sorority an international organization.
The Cystic Fibrosis Foundation (CFF) is a 501(c)(3) non-profit organization in the United States established to provide the means to cure cystic fibrosis (CF) and ensure that those living with CF live long and productive lives. The Foundation provides information about cystic fibrosis and finances CF research that aims to improve the quality of life for people with the disease. The Foundation also engages in legislative lobbying for cystic fibrosis.
City of Hope is a private, non-profit clinical research center, hospital and graduate school located in Duarte, California, United States. The center's main campus resides on 110 acres (45 ha) of land adjacent to the boundaries of Duarte and Irwindale, with a network of clinical practice locations throughout Southern California, satellite offices in Monrovia and Irwindale, and regional fundraising offices throughout the United States.
Venture philanthropy is a type of impact investment that takes concepts and techniques from venture capital finance and business management and applies them to achieving philanthropic goals. The term was first used in 1969 by John D. Rockefeller III to describe an imaginative and risk-taking approach to philanthropy that may be undertaken by charitable organizations.
The Lupus Foundation of America (LFA), founded in 1977, is a national voluntary health organization based in Washington, D.C., with a network of chapters, offices and support groups located in communities throughout the United States. The Foundation is devoted to solving the mystery of lupus. Its mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy.
Shinerama is Canada's largest post-secondary fundraiser involving students at almost 60 university and college campuses across Canada, aimed at raising money for cystic fibrosis research.
Kin Canada is a secular Canadian non-profit service organization. It promotes service, fellowship, positive values, and national pride. The members comprise Kinsmen, Kinette and Kin Clubs located throughout the country. Membership is open to all persons regardless of race, colour, or creed.
The Fight Forever Foundation is a 501(c)(3) non-profit foundation founded to find a cure for cystic fibrosis (CF), a life-threatening, genetic lung disease affecting 100,000 people worldwide. This objective is expressed in both Danny's personal mission and the shared mission of the Foundation, "Find a Cure or Die Trying." To accomplish this mission the Foundation continues to build their International Medical Advisory Board to collectively stay abreast of the evolving advancements being made for a cure, while simultaneously raising funds, to effectively support promising advancements.
The Community Foundation of the Eastern Shore (CFES) was established in 1984, and is located in Salisbury, Maryland. Its mission is to "To strengthen our community by connecting people who care with causes that matter to improve quality of life in our region" and its vision is for "...a community where all can live, learn, work, create and prosper". It serves the three lower counties of the Eastern Shore of Maryland: Somerset, Wicomico, and Worcester.
Ivacaftor is a medication used to treat cystic fibrosis in people with certain mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, who account for 4–5% cases of cystic fibrosis. It is also included in combination medications, lumacaftor/ivacaftor, tezacaftor/ivacaftor, and elexacaftor/tezacaftor/ivacaftor which are used to treat people with cystic fibrosis.
The Wolverines were an Australian country rock band formed in 1994 from Tamworth, New South Wales by Darcy Leyear, John Clinton, and Chris Doyle. The band were active between 1994 and 2012 and were known by some as "The Bad Boys of Country."
Emily's Entourage is a nonprofit organization that raises money and awareness to help find a cure for rare ("nonsense") mutations of cystic fibrosis (CF), a genetic disorder that generally affects a person's lungs and digestive system. The foundation has raised over $1 million, largely from viral fundraising through universities and video campaigns. The organization also participates in exploratory research initiatives aimed at understanding and advancing towards a cure.
Five Feet Apart is a 2019 American romantic drama film directed by Justin Baldoni and written by Mikki Daughtry and Tobias Iaconis. The film was inspired by Claire Wineland, who suffered from cystic fibrosis. Haley Lu Richardson and Cole Sprouse play two young patients with cystic fibrosis who try to have a relationship despite being forced to stay six feet apart from each other. The film was released in the United States on March 15, 2019 by CBS Films via Lionsgate. It received mixed reviews from critics and grossed $92 million worldwide.
