Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation (CFF) is a 501(c)(3) non-profit organization in the United States established to provide the means to cure and control cystic fibrosis (CF). 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.[7]

Cystic Fibrosis Foundation
CFF Logo New
FoundedDecember 16, 1955[1]
13-1930701[2]
Legal status501(c)(3) nonprofit organization[3]
FocusCystic fibrosis
Location
Catherine C. McLoud[4]
Preston W. Campbell, III, M.D.[4]
Chair, Adult Advisory Council
KC White[5]
SubsidiariesCystic Fibrosis Patient Assistance Foundation, Cystic Fibrosis Foundation Therapeutics[2]
Revenue (2016)
$192,528,975[2]
Expenses (2016)$299,650,531[2]
Employees (2016)
731[2]
Volunteers (2016)
250,000[2]
Websitewww.cff.org
Formerly called
National Cystic Fibrosis Research Foundation[6]

History

The Foundation was established in 1955 by a group of volunteers in Philadelphia, Pennsylvania.

In addition to providing grants for research into cystic fibrosis and supporting clinical trials, the foundation promotes and accredits 115 specialized centers for treatment of individuals with cystic fibrosis. The Foundation has over 80 chapters and offices across the United States.

Before it began using the current name, the organization was known as the "National Cystic Fibrosis Research Foundation".[6]

In 1989, scientists working for the Cystic Fibrosis Foundation discovered the gene that causes cystic fibrosis, considered the key to developing a cure for cystic fibrosis.

From 1982 until 1999, sports journalist Frank Deford served as chairman of the Foundation.

The Cystic Fibrosis Foundation has been a pioneer of cystic fibrosis treatment, having played a major role in the development and use of five FDA-approved therapies, including ivacaftor (Kalydeco).[7]

In 2014, the Cystic Fibrosis Foundation sold the rights to the royalties of the drugs for $3.3 billion, twenty times the Foundation’s 2013 budget.[8][9]

Present day

Currently the Foundation operates out of Bethesda, Maryland. Preston Campbell, M.D. is the active president and CEO of the organization.[10]

Events

The Foundation hosts several philanthropic events both locally around the chapters and nationwide. One of the biggest signature events is the Great Strides walk, established in 1989.It is a sponsored walk akin to Race for the Cure, where participants walk 10 kilometers (6.2 mi) to raise money to support research for cystic fibrosis. There are Great Strides walks in over 560 locations throughout the country.Great Strides has succeeded in raising over $180,000,000 for cystic fibrosis research.

Some other signature events include the CF Cycle for Life, CF Climb, Xtreme Hike, and Team CF. The list of national events includes Ultimate Golf Experience, American Airlines Celebrity Ski, and Volunteer Leadership Conference. Individual chapters may host their own events which may include, but are not limited to, fishing events, dinner dance events, golf tournaments, and finest events.[11]

References

  1. ^ "Cystic Fibrosis Foundation". Entity Search. Division of Corporations. Delaware Department of State. Retrieved May 6, 2018.
  2. ^ a b c d e f "Form 990: Return of Organization Exempt from Income Tax". Cystic Fibrosis Foundation. Guidestar. December 31, 2016.
  3. ^ "Cystic Fibrosis Foundation". Exempt Organization Search. Internal Revenue Service. Retrieved May 6, 2018.
  4. ^ a b "Board of Trustees". Cystic Fibrosis Foundation. Retrieved May 6, 2018.
  5. ^ "Advisory Council". Cystic Fibrosis Foundation. Retrieved May 6, 2018.
  6. ^ a b Dorothy H. Andersen papers, 1930-1965, Columbia University Libraries, no date. Retrieved January 15, 2014.
  7. ^ a b "About the Cystic Fibrosis Foundation". Cystic Fibrosis Foundation. Retrieved 2013-02-19.
  8. ^ Andrew Pollack (November 19, 2014), Deal by Cystic Fibrosis Foundation Raises Cash and Some Concern, New York Times, retrieved July 19, 2015
  9. ^ Joseph Walker; Jonathan D. Rockoff (November 19, 2014), Cystic Fibrosis Foundation Sells Drug’s Rights for $3.3 Billion: The Biggest Royalty Purchase Ever Reflects Group’s Share of Kalydeco Sales, Wall Street Journal, retrieved July 19, 2015
  10. ^ "Message from the President". Cystic Fibrosis Foundation. Retrieved 2013-02-13.
  11. ^ "Participate in an Event | CF Foundation". www.cff.org. Retrieved 2016-09-19.

External links

Aurora Biosciences

Aurora Biosciences was a biotechnology company founded in 1995 in San Diego to commercialize fluorescence assays based on Roger Y. Tsien's discoveries concerning green fluorescent protein and its uses in basic research - work for which Tsien eventually won the 2008 Nobel Prize in chemistry along with two other chemists. Aurora was formed at a time when established pharmaceutical companies were seeking to harness the fruits of the Human Genome Project, which had overwhelmed them with potential drug targets, and the explosion of new research tools enabled by biotechnology, as well as revolutions in chemistry that allowed many more, and many more kinds, of potential drugs to be made.

Platform technology companies like Aurora proliferated, and Aurora became a leader in providing assay development and high throughput screening services and equipment to the pharma industry. In 2000, as the investment climate turned against platform companies, Aurora started to work on its own drug discovery programs. It struck a deal with the Cystic Fibrosis Foundation under which CFF invested $30 million in Aurora, with the promise of further investment based on success, in exchange for Aurora agreeing to discover and develop new drugs to treat cystic fibrosis. This was one of the first examples of venture philanthropy. Aurora was acquired by Vertex Pharmaceuticals in 2001, but the arrangement with CFF continued and resulted in the discovery of ivacaftor in 2005 and the approval of that drug in 2012.

Benni Cinkle

Benni Cinkle is an American pop musician from Anaheim, California.Cinkle first appeared in the music video for the song "Friday" by Rebecca Black, who attended the same school in Anaheim as she did. The song became viral within a few days, gaining mostly negative media attention. Cinkle herself was the target of many malicious comments by YouTube viewers. She became a widely recognised internet meme (particularly after GIFs were made of her dancing in the music video), and soon she had entries in Urban Dictionary and the Internet Meme Museum.

Cinkle used her online attention to benefit charitable causes. She started her own nonprofit organisation, That Girl in Pink Foundation, which was initially started to help prevent bullying (particularly cyberbullying). She authored That Girl in Pink's Internet Survival Guide and visited schools in the US delivering her Don't Just Stand There presentation. She also organized a flashmob dance to help raise money for the American Red Cross to aid victims of the recent earthquake and tsunami in Japan. As well as this, she organized a walk for the Cystic Fibrosis Foundation which took place in fourteen countries, for which she received the 2012 Kids Curing Kids award from the foundation. She is also a regular blogger for The Huffington Post.

Cinkle released her first single "Can You See Me Now" and the accompanying music video in September 2011. The song, which she wrote in 2010, was inspired by stories written on the website sixbillionsecrets.com. The song deals with issues such as bullying, abuse, depression and self-harm. As of July 2012, the song's video on YouTube has over a million views. Her second single "Gotta Get Out" was released in June 2012. The song's music video, which was filmed in New York City, Los Angeles and Paris was released in July of the same year.

Cleveland Marathon

The Cleveland Marathon is an annual marathon in Cleveland, Ohio. The 26.2-mile (42.2 km) course begins at the corner of St. Clair and 9th and participants have eight hours to finish the race. The first edition was held in 1978. A half marathon, and 10K, including a Corporate Team Challenge, are held concurrently with the full marathon. A 5k race is held on the day before the marathon race day.

At the finish line of the marathon, half marathon, and 10K the 26.3-mile (42.3 km) Rock Party is held. This party includes live entertainment, food vendors, and a beer garden.

The first prize in the Marathon event is $3,000 while a prize of $2,000 is on offer for the 10 km run. Among the charities supported by the marathon are The Leukemia & Lymphoma Society and the Cystic Fibrosis Foundation.

Cystic Fibrosis Canada

Cystic Fibrosis Canada is a national charitable not-for-profit corporation established in 1960, and is one of the world’s top three charitable organizations committed to finding a cure for cystic fibrosis (CF).Cystic Fibrosis Canada's mandate is to help individuals with cystic fibrosis, principally by funding cystic fibrosis research and care. The organization also provides educational materials for the cystic fibrosis community and the general public; undertakes advocacy initiatives with, and on behalf of Canadians with cystic fibrosis, and raises funds to supports its programs.

Cystic Fibrosis Trust

The Cystic Fibrosis Trust (stylised as Cystic Fibrosis), 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.

Danielle Dube

Danielle Dube (born March 10, 1976) played for the Canadian National women's ice hockey team from 1994 to 1998 and from 2000 to 2002. She was a late cut from the 1998 and 2002 Canadian Olympic teams.

On December 11, 2002, Danielle Dube became the third female goaltender to start in goal for a professional men's team. Dube was the goalie for the Long Beach Ice Dogs in a loss against the San Diego Gulls. She stopped 12 of 13 shots for the Ice Dogs. In 2008, she had considered approaching the Vancouver Canucks, with hopes of earning a recommendation to play for the ECHL's Victoria Salmon Kings.On August 26, 2011, she participated in the Longest Ice Hockey Game 4 CF, at Canlan Ice Sports Burnaby 8 Rinks in Burnaby, British Columbia. The goal was to play for the next 10 days as 40 women attempted to set a new Guinness World Record for playing the longest hockey game while also raising funds and awareness for the Canadian Cystic Fibrosis Foundation.Dube is currently studying at the University of British Columbia. She joined the UBC Thunderbirds women's hockey program as a player at the beginning of the 2012-13 Canada West season and helped the team to the greatest turnaround in Canadian Interuniversity Sport history.

Delta Phi Epsilon (social)

Delta Phi Epsilon (ΔΦΕ or DPhiE) 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. It has 109 active chapters, two of which are located in Canada, making the sorority an international organization. The current international executive director is Nicole DeFeo (Phi Tau- Rutgers University-Camden).

Denufosol

Denufosol (INN) is an inhaled drug for the treatment of cystic fibrosis, being developed by Inspire Pharmaceuticals and sponsored by the Cystic Fibrosis Foundation. It was tested in two Phase III clinical trials, TIGER-1 and TIGER-2. Initially, in the first Phase III trial, TIGER-1, the compound showed significant results as compared with placebo. In the second Phase III trial, TIGER-2, the compound did not meet the primary endpoint, a significant change in baseline FEV1 (forced expiratory volume in one second) at the week 48 endpoint as compared to placebo. As of 2011, no additional clinical studies are being conducted with the compound.

The drug was also investigated for the treatment of retinal detachment and other retinal diseases, but trials were terminated in 2006.

Ivacaftor

Ivacaftor (trade name Kalydeco) is a drug used to treat cystic fibrosis in people with certain mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene (primarily the G551D mutation), who account for 4–5% cases of cystic fibrosis. It is also included in a combination drug, lumacaftor/ivacaftor (trade name Orkambi), which is used to treat people with cystic fibrosis who are homozygous for the F508del mutation in CFTR.

Ivacaftor was developed by Vertex Pharmaceuticals in conjunction with the Cystic Fibrosis Foundation and is the first drug that treats the underlying cause rather than the symptoms of the disease. It was approved by the FDA in January 2012. It is one of the most expensive drugs, costing over US$300,000 per year, which has led to criticism of the high cost. The combination drug was approved by the FDA in July 2015.

Cystic fibrosis is caused by any one of several defects in the CFTR protein, which regulates fluid flow within cells and affects the components of sweat, digestive fluids, and mucus. One such defect is the G551D mutation, in which the amino acid glycine (G) in position 551 is replaced with aspartic acid (D). G551D is characterized by a dysfunctional CFTR protein on the cell surface. In the case of G551D, the protein is trafficked to the correct area, the epithelial cell surface, but once there the protein cannot transport chloride through the channel. Ivacaftor, a CFTR potentiator, improves the transport of chloride through the ion channel by binding to the channels directly to induce a non-conventional mode of gating which in turn increases the probability that the channel is open.

List of cystic fibrosis organizations

The following organizations assist people with or do research into cystic fibrosis, a hereditary disease affecting the lungs and digestive system, causing progressive disability and often early death.

Muriel Kauffman

In 1994, Muriel dedicated much of her foundation's effort to realizing the construction of the Kauffman Center for the Performing Arts.

Muriel Irene McBrien Kauffman (August 28, 1916 – March 17, 1995) was a civic leader and philanthropist in Kansas City, Missouri. She was the wife and partner of Ewing Kauffman. Ewing and Muriel worked together at Marion Labs and were the founding owners of the Kansas City Royals baseball team.

She was born in Toronto, Ontario, graduated from the Trafalgar Castle School in Whitby, Ontario and McMaster University in Hamilton, Ontario. Her father was Toronto lawyer and politician Fred McBrien. She met Ewing the early 1960s in Miami, Florida. He was attending a medical convention and she was vacationing at the same hotel. They married in February 1962.

After her death, her remains were interred at the Ewing and Muriel Kauffman Memorial Garden next to her husband's remains.in 1987, the Foundations for Ewing and Muriel split due to their diverse interests; Muriel focused her philanthropic effort on performing and visual arts, as well as causes related to healthcare, whereas Ewing's favorite charities revolved around education and entrepreneurial support. Muriel's legacy is further cemetned with her receipt of the Mr. Baseball Award from the Baseball Writer Association of America, the William Booth Award from the Salvation Army, and, with her husband, the 1986 Mankind Award from the Heart of America Chapter of the Cystic Fibrosis Foundation. Muriel was named a director of UMB in 1971, and she was granted an honorary doctor of law degree from McMaster University (her undergraduate alma mater) in 1985.

Paul di Sant’Agnese

Paul di Sant’Agnese (1914–2005 ) was the founder of the Cystic Fibrosis Foundation and of Cystic Fibrosis Care in the United States. He was a physician, researcher and one of the first clinicians who devoted his life to understanding and conquering cystic fibrosis through his work at the Columbia University Medical Center, New York City.

During the heat wave of 1949, he was the first to recognize CF babies were at special risk for heat prostration. He thus discovered that sweat was abnormal in CF. This led to the development of the sweat test, which is a major way cystic fibrosis can be diagnosed. This work not only resulted in the development of the CF sweat test—which, today, remains the cornerstone of the diagnosis of the disease—but also opened up areas of research that ultimately helped to identify the basic defect in CF.

Recher Theatre

Recher Theatre was a concert venue in Towson, Maryland. It was located at 512 York Road in the building previously operated as the Towson Theatre, a one-screen movie theater. The Towson Theatre was designed by architect John Ahlers of the George Norbury MacKenzie III architectural firm. It cost $100,000 to build and opened on March 1, 1928. The theatre was sold to the Recher family in the 1950s, who continued running the cinema into the 1990s. They then converted it into an upscale billiard parlor. The building was later transformed into The Recher Theater, a concert venue, which opened in 1999.

The small venue with a capacity of only 700 hosted many national acts over the years, including: Aimee Mann, Andrew W.K., All Time Low, Anberlin, Bo Diddley, Boondox, Breaking Benjamin, Buckethead, Buckcherry, Charlie Daniels Band, Cheap Trick, Crack The Sky, Danyul Reyman Blues Band, Danzig, Dark Star Orchestra, Demon Hunter, Electric Light Orchestra, Flaming Lips, Fuel, George Clinton, Good Charlotte, Iggy Pop, Jeffree Star, Judas Priest, Linkin Park, Little Feat, O.A.R., Papa Roach, Puddle of Mudd, Reel Big Fish, Robert Cray, Shinedown, Slayer, They Might Be Giants, Third Eye Blind, The White Stripes, Thirty Seconds to Mars, and Zakk Wylde.It enjoyed a strong run as one of the area's premier music venues, but was eventually squeezed out by larger venues. The Recher Theater closed in 2013. The Recher ended its days as a live music staple with a sold-out fundraising concert titled "The Last Hurrah!" featuring 17 bands, many of which had played at the Recher over the last decade. The bands performing included The Hint, American Diary, Thin Dark Line, Dropout Year, All Mighty Senators, Warren Boes/Andy Belt, Burning Rosewood, Shane from Valencia, Evan Michael, The Everlove/Adelphi, Hectic Red, Technicolor Minivan, Oh the Story, Brighter Shades, Rob Fahey & Pieces, Monday Night Social Club Band, Serena Miller & Riot, The Regal Begals, and Ashes Remain. All proceeds were donated to Catherine's Fund For Cystic Fibrosis, associated with the Maryland Chapter of the Cystic Fibrosis Foundation.The former location of the Recher was converted into a nightclub known as the Torrent Nightclub. The change was attributed to the rise of popularity of DJs and electronic dance music. Recher said, "The market for live music is down, and the local music scene, as well, wasn't what it used to be." After nearly a year of construction, the Torrent Nightclub opened on Thursday, Feb. 13,2014, featuring British DJs EC Twins. Some community members don't want a nightclub in that space.

Regina Webb

Regina Webb (born March 15, 1980) is an American children's book author. The majority of her books focus on kids, nature and animals. Webb has been recognized as a psychology enthusiast and studied in this field until becoming a published author.

Her books have been known to help children's learning progress over a select series. Teachers have identified her as an author who can connect with kids. Her books have been nominated for many Reading Choice Awards. Webb is proud to have been born and raised in Kentucky and concurs with Kentucky Reading Association (KRA) in their involvement with promoting reading for all. She also participates in the Kentucky Women Writers Conference. Webb also has a noted compassion for children and contributes to St. Jude Children's Research Hospital and Cystic Fibrosis Foundation to support children's health.

Shinerama

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.

Shinerama was developed in 1961 at Waterloo Lutheran University (now Wilfrid Laurier University) by Paul Enns as a way for first-year students to get involved and give back to their community. Enns partnered with the Esquire Shoe Polish Company and generated funds were initially donated to the Sunbeam Home for Retarded Children in Kitchener. It was not until 1964, when the national Shinerama campaign for the Canadian Cystic Fibrosis Foundation was launched, that funds were directed to support Cystic Fibrosis research.The success of Shinerama allowed this charitable event to grow from a small municipal shoe-shining event to becoming one of Canada's largest fundraising efforts. Shinerama currently boasts 55 universities participating in the event countrywide in this annual affair and continues to work with the CCFF.In 2006, Shinerama attracted more than 35,000 student volunteers in more than 56 Canadian cities, towns, and communities. Together, students from coast to coast shine shoes, wash cars, co-ordinate raffles and barbecues, as well as numerous other events, in support of cystic fibrosis research and care.

Shinerama has raised more than $17.5 million to support the fight against cystic fibrosis since the campaign began. In 2007, Shinerama student volunteers raised more than $985,638, a record breaking year, to help fund CCFF research and treatment programs. In 2010, Shinerama student volunteers raised $1,000,000 during their campaigns.

Sweat test

The sweat test measures the concentration of chloride that is excreted in sweat. It is used to screen for cystic fibrosis (CF). Due to defective chloride channels (CFTR), the concentration of chloride in sweat is elevated in individuals with CF.

Travis Flores

Travis Michael Flores (born April 7, 1991) is an American activist, philanthropist, motivational speaker, actor and children's book author. He has been featured in works such as Chicken Soup for the Soul, Readers Digest: Selections, Charlie's Cancer Rescue and The Lemonade Stand. Flores has cystic fibrosis and has spoken very openly about it, having served as a spokesperson for various cystic fibrosis related fundraisers. He is best known for his charitable work with both the Make-A-Wish Foundation and the Cystic Fibrosis Foundation, and has donated a majority of his book's proceeds to the two organizations. To date, he has helped to raise over half a million dollars for the Cystic Fibrosis Foundation. Flores also established his own 501(c)(3) organization in 2005, which provides laptops to chronically ill youth in hospitals.When Flores was twelve years old, he began work with illustrator Michelle Ciappa to prepare his children's book, "The Spider Who Never Gave Up'', for publishing. In 2004, after the book was published when Flores was thirteen, he began a motivational speaking and book tour. In the same year, June 18 was proclaimed by Mayor Michael Mullen as "Travis Flores Day" in Marietta, Ohio; a city near his hometown of Newport, Ohio. A year later, Flores partnered with Disney to print an edition of his book for a Make-A-Wish Foundation event, in which two million dollars was donated to the charity. The media attention and success of the event enabled Flores to extend his tour another two years.

Flores started college when he was sixteen years old and received his bachelor's degree in Acting from Marymount Manhattan College by the age of twenty. In 2010, during his work as an undergraduate student, he had the opportunity to work with Susan Batson on the Broadway workshops of the Tennessee Williams play, In Masks Outrageous and Austere. In 2012, the play opened at Culture Project theater in New York City, but Flores was no longer affiliated with the project. While working in New York City, he attended New York University and graduated in Spring of 2013 with a master's degree in Fundraising.On March 3, 2015, Flores successfully received a double-lung transplant at Ronald Reagan UCLA Medical Center. Following the operation, he made his big screen debut in the film, Who's Driving Doug.

Flores currently resides in Los Angeles, California while pursuing his philanthropic outreaches, acting and writing. His parents, Timothy and Teresa Flores, as well as his two siblings, Justin and Brandon Flores, live in Ohio.

Venture philanthropy

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.

Vertex Pharmaceuticals

Vertex Pharmaceuticals, Inc. 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, near Oxford, England.

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