Claire Lucia Wineland (April 10, 1997 – September 2, 2018) was an American activist, author, speaker and social media personality.[2][3] Through her non-profit organization, Claire's Place Foundation, she provided support to children and families affected by cystic fibrosis (CF).[2][3] She died from a blood clot one week after receiving a double lung transplant at the age of 21.
Claire Wineland | |
|---|---|
 Wineland in 2010 | |
| Born | April 10, 1997 Austin, Texas, U.S.[1] |
| Died | September 2, 2018 (aged 21) San Diego, California, U.S. |
| Occupation(s) | Activist, author |
| Years active | 2010–2018 |
| Website | clairesplacefoundation |
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.[4]
Personal life
editWineland was born with cystic fibrosis in Austin, Texas.[5] She enjoyed performing from a young age and appeared in The Music Man at age four.[3] At age 13, her lungs failed and she was placed in a medically-induced coma.[6] She was given a 1% chance of survival and awoke after 16 days.[6]
Activism
editWineland founded the Claire's Place Foundation at age 13.[2] Inspired by the community's support while she was in a coma, she launched the 501(c)(3) non-profit to provide support to children with cystic fibrosis and their affected families.[3] 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.
"If my biggest problem in life was to be healthy, I'd be incredibly bored. I don't spend any time thinking about the day that I'm cured, or the day that I'm healthier, and that's because I know that on a certain level, it doesn't matter. The moment you realize it's not about avoiding suffering; it's about making something from your suffering, you're incredibly freed. Everything I'm proud of comes from some of the darkest things in my life."
Wineland was chosen to be the keynote speaker at AARC Congress, the 63rd International Respiratory Convention and Exhibition.[8] She was a TEDx speaker and spoke at a number of conferences worldwide. She appeared in an episode of Red Band Society and in the documentary series My Last Days.[3] She joined the Philips "Breathless Choir" as a soloist.[9]
Clairity Project and YouTube channel
editThe 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.[2] 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.”[2]
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.[10]
Wineland continued to operate her YouTube channel and uploaded nine videos prior to her death.[11]
Death
editOn August 26, 2018, Wineland underwent a double lung transplant. Shortly after the surgery, Wineland suffered an ischemic stroke due to a blood clot which "cut off blood flow to the right side of her brain."[12] She died on September 2, 2018, at UC San Diego Thornton Pavilion.[12][1][13]
Legacy
editIn 2016, Wineland was listed as one of Seventeen magazine's 17 Power Teens. She was a Fox Teen Choice Award honoree in 2015[14] and received the Gloria Barron Prize for Young Heroes[3] and Los Angeles Business Journal's Small Nonprofit of the Year Award in 2014.[15]
The 2019 film Five Feet Apart was inspired by and dedicated to Wineland, who served as a consultant on the film.
Documentary
editYouTube Originals released "Claire,"[16] a documentary about Wineland, which was directed and produced by Academy Award 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
editReferences
edit- ^ a b "Its been a very long few days and I wanted to give everyone an update on how Claire is doing". Claire's Place Foundation, Inc. via Facebook. Archived from the original on October 18, 2019. Retrieved September 3, 2018.
- ^ a b c d e "Living while dying: 'Little Buddha' wisdom from a terminally ill 'goofball'". CNN. July 5, 2017. Archived from the original on September 5, 2018. Retrieved July 26, 2017.
- ^ a b c d e f Rosenfeld, Laura. "Who Is Claire Wineland? The 'My Last Days' Subject Is Helping Others Live Their Best Lives". Archived from the original on September 3, 2018. Retrieved July 26, 2017.
- ^ ""Every Breath I Take, Surviving and Thriving with Cystic Fibrosis"". Claire's Place Foundation. February 23, 2014. Archived from the original on February 1, 2021. Retrieved January 29, 2021.
- ^ "Meet Claire". North Star Moving. September 28, 2010. Archived from the original on September 4, 2018. Retrieved September 3, 2018.
- ^ a b "A lung transplant gave her hope for a longer life; now her family prays for 'another miracle'". CNN. August 30, 2018. Archived from the original on September 4, 2018. Retrieved September 3, 2018.
- ^ "What I - and the World - Learned from Claire Winland's Passing". glamour.com. September 5, 2018. Archived from the original on April 12, 2021. Retrieved April 12, 2021.
- ^ "AARC Congress Announces Claire Wineland As Keynote Speaker". AARC. July 20, 2017. Archived from the original on July 28, 2017. Retrieved July 26, 2017.
- ^ "breathless choir – Claire's Place Foundation". clairesplacefoundation.org. Archived from the original on June 12, 2018. Retrieved September 4, 2018.
- ^ Claire Wineland (7 August 2017). "I stopped doing the Clairity Project because I got screwed over". Claire Wineland. YouTube. Archived from the original on 9 September 2018. Retrieved 9 September 2018.
- ^ Claire Wineland (7 August 2017). "Claire Wineland YouTube channel". Claire Wineland. YouTube. Archived from the original on 9 September 2018. Retrieved 9 September 2018.
- ^ a b "Claire Wineland, inspirational speaker and social media star, dies one week after lung transplant". CNN. September 3, 2018. Archived from the original on September 19, 2018. Retrieved September 3, 2018.
- ^ "Claire's Place Foundation, Inc". www.facebook.com. Archived from the original on April 14, 2019. Retrieved December 9, 2018.
- ^ "Meet the 2015 Teen Choice Pro-Social Honorees". Archived from the original on November 9, 2016.
- ^ "Nonprofit & Corporate Citizenship Awards 2014" (PDF). Los Angeles Business Journal. Archived from the original (PDF) on August 4, 2016. Retrieved July 26, 2017.
- ^ Claire | The Documentary, September 2, 2019, archived from the original on July 20, 2023, retrieved July 21, 2023
External links
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