Claire Lucia Wineland (April 10, 1997 – September 2, 2018) was born with cystic fibrosis in Austin, Texas.
What is cystic fibrosis?
‘Cystic fibrosis is a genetic disease that causes persistent infections in the lungs and limits one’s ability to breathe over time.
A defective gene causes a thick, sticky buildup of mucus in the lungs, clogging airways and trapping bacteria that leads to infections, lung damage and eventually respiratory failure. Mucus buildup also occurs in the pancreas, preventing the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
CF is typically diagnosed in infancy and has a life expectancy rate of 37 years old.
There are approximately 30,000 cases of CF in the US, with roughly 1,000 new cases diagnosed each year.
“Give Me Liberty or Give Me Death” were the words delivered by Patrick Henry during his impassioned speech at the 1775 Virginia Convention in seeking independence for his home state. Now, nearly 250 years later, Claire Wineland, an impassioned cystic fibrosis patient and founder of a (501)c3 charitable foundation, Claire’s Place Foundation (that assists families living with CF), whose desire to see terminally ill patients live life to their fullest, puts her own spin on that famous phrase “Give Me Dignity or Give Me Death.”
Claire shares her message of hope and her daily struggle of prioritizing happiness over health. She enjoyed performing from a young age and appeared in The Music Man at age 4. 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. Inspired by community support while she was in a coma, she also launched the 501(c)(3) non-profit to provide support to children with cystic fibrosis and their affected families.
Claire Wineland has been living with cystic fibrosis her entire life. At the age of 13 she founded Claire’s Place Foundation, Inc., a 501c3 non-profit organization providing support to children and families affected by cystic fibrosis (CF).
At 20 years old Claire’s unique inspirational model for people living with this disease has led her to be a TEDx Speaker at 14 years old and receive multiple awards including being named one of Seventeen Magazine’s “17 Power Teens” of 2016, Fox Teen Choice Awards 2015, also the Gloria Barron Prize for Young Heroes, and the winner of Los Angeles Business Journal’s “Small Nonprofit of the Year” among others.
She has been featured on CNN, Inside Edition, The Dr. Oz Show, Huffington Post, ABC News, Cosmopolitan, People, Ladies’ Home Journal and more. Claire’s Place Foundation is a way for Claire to give back with hope, strength, and joy and make meaning of what she has had to go through. For more information and make a donation, please visit
The “Claire’s Place Foundation”, operates through 2 programs: Support Families, which offers personalized support and assistance in areas such as treatment, care processes and emotional support from other parent volunteers; and also Extended Hospital Stay Grants which provide financial assistance to families who are struggling with extended hospital stays. Claire’s Place Foundation has provided financial assistance to 26 families to date.
The Clairity Project is a website featuring a series of videos, or vlogs, which hopes to inspire and educate others about living with a terminal illness. According to the website, Wineland’s activism aims “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.”
Wineland was chosen to be the keynote speaker at AARC Congress, 63rd International Respiratory Convention and Exhibition. She was a TEDx speaker and has spoken at a number of conferences worldwide. Claire appeared in an episode of Red Band Society and in the documentary My Last Days. She joined the Philips “Breathless Choir” as a soloist. Wineland also wrote the book Every Breath I Take, Surviving and Thriving with Cystic Fibrosis and was a TEDx speaker. “Death is Inevitable. Living a full-life we can be proud of is something we can control.” ~Claire Wineland 🙂
The way sick people are captured in the media completely ruined any ounce of self confidence I had growing up.
I learned to deeply hate having my picture taken by professionals because there was always a need to make me look childlike and innocent — lacking in anything sexual or appealing. I was convinced I looked like an ugly sickly five year old for the first 2 years of high school and that was why guys never seemed to be interested in me “that” way. It took having a fair amount of relationships before I realized that. . . I wasn’t the empty smiling shell of a girl I saw reflected back in pictures.
It’s so much easier to believe that sick people are cherubs- held in perpetual youth and innocence- who simply don’t understand the truth of their condition because they are living up in the clouds. Seeing people who are sick as anything more complex and intelligent than that would mean we couldn’t use them as these false beacons of hope.
I’ve struggled more with guys, depression drugs, family and career than I ever have with my illness. I’m not an innocent and I’m not a child. I’m not “dying before I have had a chance to live” and what I choose to talk about with the world is not just empty positive falsehoods.
Sick people deserve to be seen as more than hollow shells. . . just waiting for their lives to begin. As always thank you to deeply profound .. rest easy. On August 26, 2018, Wineland had a stroke due to a blood clot which “cut off blood flow. . . to the right side of her brain.” one week after a double-lung transplant. She died, aged 21, on September 2, 2018, at 6:00 PM, at the UC San Diego Thornton Pavilion.
Claire Wineland, who was an organ donor, has already saved the lives of two people, according to an email Claire’s mother shared with CNN. Her right kidney reportedly went to 44-year-old San Diego woman, and a 55-year-old man from Northern California is said to have received her left kidney. “Claire’s corneas and tissue was recovered and she will be able to enhance the life of up to 50 people,” a family services specialist wrote in the email.
“Claire’s gift is huge, I want your family to know that your daughter is a hero.”
Wineland’s family asks that anyone who wants to honor Claire’s memory donate to her foundation, which will continue to assist people around the world who are impacted by cystic fibrosis.
At a 2017 TEDx talk, Ms Wineland spoke about the importance of self-worth when living with a life-shortening illness. “Life isn’t just about being happy… It’s about what you’re making of your life and whether you can find a deep pride in who you are and what you’ve given,” she said.