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Claire Lucia Wineland (April 10, 1997 – September 2, 2018) was an American activist, author, speaker and
social media personality A social media influencer, or simply influencer (also known as an online influencer), is a person who builds a grassroots online presence through engaging content such as photos, videos, and updates. This is done by using direct audience intera ...
. Through her non-profit organization, Claire's Place Foundation, she provided support to children and families affected by
cystic fibrosis Cystic fibrosis (CF) is a genetic disorder inherited in an autosomal recessive manner that impairs the normal clearance of Sputum, mucus from the lungs, which facilitates the colonization and infection of the lungs by bacteria, notably ''Staphy ...
(CF). She died from a blood clot one week after receiving a double
lung transplant Lung transplantation, or pulmonary transplantation, is a surgical procedure in which one or both lungs are replaced by lungs from a donor. Donor lungs can be retrieved from a living or deceased donor. A living donor can only donate one Lobes of t ...
at the age of 21. Wineland and a friend, Chynna Bracha Levin, wrote the book ''Every Breath I Take, Surviving and Thriving with Cystic Fibrosis'', published by BusinessGhost, Inc. on Sept. 21, 2012.


Personal life

Wineland was born with cystic fibrosis in
Austin, Texas Austin ( ) is the List of capitals in the United States, capital city of the U.S. state of Texas. It is the county seat and most populous city of Travis County, Texas, Travis County, with portions extending into Hays County, Texas, Hays and W ...
. She enjoyed performing from a young age and appeared in ''
The Music Man ''The Music Man'' is a musical theatre, musical with book, music, and lyrics by Meredith Willson, based on a story by Willson and Franklin Lacey. The plot concerns a confidence trick, con man Harold Hill, who poses as a boys' band organizer and ...
'' at age four. At age 13, her lungs failed and she was placed in a medically-induced coma. She was given a 1% chance of survival and awoke after 16 days.


Activism

Wineland founded the Claire's Place Foundation at age 13. Inspired by the community's support while she was in a coma, she launched the
501(c)(3) A 501(c)(3) organization is a United States corporation, Trust (business), trust, unincorporated association or other type of organization exempt from federal income tax under section 501(c)(3) of Title 26 of the United States Code. It is one of ...
non-profit to provide support to children with cystic fibrosis and their affected families. The foundation offers both emotional and financial support through their Support Families Network and the Extended Hospital Stay Grants program. The Extended Hospital Stay Grant program provides financial assistance to families with children experiencing a hospital stay of at least 14 consecutive days due to cystic fibrosis. The grants have enabled families to pay their mortgage, rent, medical bills and other essential living expenses. Support Families offers personalized support and assistance in areas such as treatment, care processes and emotional support from other parent volunteers. Wineland was chosen to be the keynote speaker at AARC Congress, the 63rd International Respiratory Convention and Exhibition. She was a
TEDx TED Conferences, LLC (Technology, Entertainment, Design) is an American-Canadian non-profit media organization that posts international talks online for free distribution under the slogan "Ideas Change Everything" (previously "Ideas Worth Sprea ...
speaker and spoke at a number of conferences worldwide. She appeared in an episode of ''
Red Band Society ''Red Band Society'' is an American Teen drama, teen Medical drama, medical comedy-drama television series that aired on Fox Broadcasting Company, Fox from September 17, 2014, to February 7, 2015. It was developed by Margaret Nagle. Cast and ...
'' and in the documentary series ''My Last Days''. She joined the Philips "Breathless Choir" as a soloist.


Clairity Project and YouTube channel

The Clairity Project is a website featuring a series of educational videos and vlogs hosted on YouTube which hope to inspire and educate others about living with a terminal illness. According to the website, Wineland's activism aimed "to shed some light on what it's really like to be sick, and change the way we view illness and those living with it.” On August 7, 2017, after not uploading any videos for over a year, Wineland returned to YouTube with a new account under her real name. Her first uploaded video, "I stopped doing the Clarity Project because I got screwed over," revealed that The Clairity Project was operated by a video editing company and she had little to no control or input over the editing of her videos apart from their filming and creation. She revealed that after taking a break from creating videos for some months due to declining health, the company refused to allow her to log into any accounts relating to The Clairity Project. Due to no formal contracts over ownership of the project being in place, the company continued to profit from the project. Wineland stated she did not have the energy or the money to take the case to court. Wineland continued to operate her YouTube channel and uploaded nine videos prior to her death.


Death

On August 26, 2018, Wineland underwent a double
lung transplant Lung transplantation, or pulmonary transplantation, is a surgical procedure in which one or both lungs are replaced by lungs from a donor. Donor lungs can be retrieved from a living or deceased donor. A living donor can only donate one Lobes of t ...
. Shortly after the surgery, Wineland suffered an
ischemic stroke Stroke is a medical condition in which poor blood flow to a part of the brain causes cell death. There are two main types of stroke: ischemic, due to lack of blood flow, and hemorrhagic, due to bleeding. Both cause parts of the brain to stop ...
due to a
blood clot A thrombus ( thrombi) is a solid or semisolid aggregate from constituents of the blood (platelets, fibrin, red blood cells, white blood cells) within the circulatory system during life. A blood clot is the final product of the blood coagulatio ...
which "cut off blood flow to the right side of her brain." She died on September 2, 2018, at UC San Diego Thornton Pavilion.


Legacy

In 2016, Wineland was listed as one of ''Seventeen'' magazine's 17 Power Teens. She was a Fox Teen Choice Award honoree in 2015 and received the Gloria Barron Prize for Young Heroes and ''
Los Angeles Business Journal The ''Los Angeles Business Journal'', established in 1979, is a weekly newspaper and online news source in Los Angeles, California Los Angeles, often referred to by its initials L.A., is the List of municipalities in California, most po ...
'' Small Nonprofit of the Year Award in 2014. In 2025, Claire's mother, Melissa Yeager, who has carried on as the executive director of the Claire's Place Foundation since Claire's passing, won the Los Angeles Business Journal's Nonprofit Executive of the Year award. The 2019 film '' Five Feet Apart'' was inspired by and dedicated to Wineland, who served as a consultant on the film.


Documentary

YouTube Originals released "Claire," a documentary about Wineland, which was directed and produced by
Academy Award The Academy Awards, commonly known as the Oscars, are awards for artistic and technical merit in film. They are presented annually by the Academy of Motion Picture Arts and Sciences (AMPAS) in the United States in recognition of excellence ...
winner Nicholas Reed (“ The Lady in Number 6”) and Ryan Azevedo ("Unpinned") and produced by Paul Foley (“Unpinned”). It was released on the first anniversary of Wineland's death.


See also

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Disability rights movement The disability rights movement is a global social movement that seeks to secure equal opportunities and equal rights for all disabled people. It is made up of organizations of disability activists, also known as disability advocates, around ...
*
Kirsty Howard Kirsty Ellen Howard (20 September 1995 – 24 October 2015) was an English children's hospice advocate known for her fundraising efforts for Francis House Children's Hospice in Didsbury, Manchester. As a patient of the hospice, Howard was the f ...


References


External links

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Claire's Place Foundation: Official WebsiteClaire Wineland YouTube channel
{{DEFAULTSORT:Wineland, Claire 1997 births 2018 deaths 21st-century American women writers 21st-century American non-fiction writers American women non-fiction writers Genetic diseases and disorders Lung transplant recipients People with cystic fibrosis Writers from Austin, Texas YouTubers from Austin, Texas