Browsing Category



What It’s Like to Die Online ~ Marie Claire Article

March 13, 2018

Hi and thank you for visiting our site!

Our Founder, Claire Wineland, is honored to be featured alongside some pretty amazing YouTubers in Marie Claire’s article below.  Be sure to look them up for a little inspiration!

What It’s Like to Die Online (Click this title to see full article)
Chronically ill women are turning to YouTube to share their lives—and deaths.

MAR 13, 2018

“I have tried filming this video so many times, but I just don’t know what to say.”

Fifteen-year-old Sophia Gall has cancer, but from her hairless head and the title of the video, “My Cancer Is Worse Than Ever,” we already knew that. The problem is that there’s nothing left that can be done. Gall makes the announcement on her YouTube channel in an eight-minute vlog that has been watched more than a million times since it was posted in May 2017. The Australian teenager, an otherwise sunny, ebullient girl with cornflower blue eyes, is sitting in front of a camera on her pink bed, wearing a knitted beanie, sobbing.


Gall has been battling a rare form of bone cancer since June 2015. She thought she was doing better, but her most recent scans did not go well. The cancer has spread down her leg, and the doctors say it’s too aggressive to fix with chemotherapy and radiation. “I’m just going to go on a big holiday around the world and try to enjoy my life as much as I can,” she tells the camera, her freckled face collapsed, “because I don’t know how much longer it’s gonna be.”


Gall has been uploading YouTube videos about her life with cancer since a few months after she was diagnosed. In the two years since, she’s gained more than 145,000 loyal subscribers. They flock to the heartbreaking video, leaving comments about how brave she is and messages to stay strong. Gall’s next four weeks of content are much cheerier: She squeals at the Eiffel Tower, delights in a New York City shopping spree. Aspirational travel videos are a dime a dozen on YouTube, but these videos are different—the girl in front of the camera is dying.

It’s a phenomenon unique to the social media-centric era we live in—an era when even cancer is content.


A growing community of young vloggers use YouTube to chronicle their journeys with serious illnesses from diagnosis to hospital visits to sometimes getting very bad news. Arguably, the most famous of these content creators was Talia Joy Castellano, a vivacious beauty YouTuber who died of cancer in 2013 just a month before her fourteenth birthday. Over her two-year YouTube career, Castellano gained 1.4 million subscribers who watched her battle neuroblastoma (a progressive tumor of the nervous system) while falling in love with her lively makeup tutorials and precocious sense of humor.

“This is beyond reality television. It’s real life, with life and death consequences,” says mental health expert Scott Dehorty, a social worker and therapist in Maryland. It’s a phenomenon unique to the social media-centric era we live in—an era when even cancer is content, when you can love, lose, and mourn a person you only ever knew through a screen.

When Castellano first started her channel, becoming a “cancer vlogger” wasn’t her intention, she simply wanted to talk about makeup. Following her diagnosis, a family friend taught Castellano how to decorate her face with colorful eye shadows and lipsticks as a distraction. She came to love watching makeup tutorials. “Eventually she thought, ‘You know what? I could do this. I’m good enough to do what they do,’” says Castellano’s mom, Desirée. In 2011, the pre-teen began uploading her own bubbly tutorials and haul videos, which she’d film and edit on her laptop in her bedroom. It wasn’t until Castellano’s budding viewership began asking personal questions—why she didn’t have hair, for example—that she decided to talk about her disease. “She started raising awareness for childhood cancer through her videos, and the channel blew up,” recalls her sister Mattia, now 23. By 2012, her influence as an advocate landed her an appearance on The Ellen DeGeneres Show and she was named an honorary CoverGirl by the cosmetics company.

“Every morning I would wake up in the hospital with nothing to do. I’d basically just spend my day watching other people on YouTube,” says Gall of the impetus for her channel. “Eventually I thought, What would be so hard if I made these videos?”

“When you see somebody whose battle is so over-the-top, so beyond what you’ve experienced, you realize that you can get through your own struggles.”

Mary Dalton was diagnosed with Ewing’s sarcoma, a rare childhood bone cancer, the summer before her freshman year of high school in 2015. She started vlogging about her cancer journey later that year. “I’d always been interested in YouTube, and when I got sick I was really lonely and didn’t have a lot of ways to reach out to people,” she explains, adding that she was inspired by Talia Castellano. Filming and editing quickly became a fun and productive activity for Dalton to focus on during tough stretches of treatment. “Working on my videos gave me a routine,” the now-17-year-old says. “It was therapeutic.”


For Racheli Alkobey, who found out she had Hodgkin’s Lymphoma as a senior in college in 2015, the instinct to share her experience online was immediate—she started filming her first YouTube video the day she was diagnosed. “I just whipped out my phone,” she remembers. Alkobey’s first cancer vlog opens on a shot of her face lit by neon lights, a cheerful pop song thumping in the background. “So I’m bowling with friends…. Today was the day I found out that I have Hodgkin’s Lymphoma,” she tells the camera through a bewildered, anxious smile. “I’m a little bit in shock, but I have the most amazing


friends.” The rest of Alkobey’s video cuts to clips of her running errands with her pals, starting a new raw food diet, driving to the airport to catch a flight to meet with a hematologist. The vlog, titled “The Day After My Diagnosis with Cancer,” ends with an image of Alkobey snuggling in bed with her best friend. “Everything’s gonna be okay,” she says with a hopeful grin.

At the time this video was posted, Alkobey saw YouTube simply as a convenient way to keep her friends and family updated on her health; and hopefully, her vlogs would reach a few other young people with cancer, giving them something they could relate to. Before long, however, Alkobey’s videos…and Dalton’s…and Gall’s would come to mean more to their subscribers, and to their own lives, than they could have imagined.

When asked why she thinks strangers were so attracted to the story of a terminally ill kid, Castellano’s sister Mattia says that, “Talia gave people hope. To watch this little girl who is dying have such a positive attitude was just captivating.” People struggling with cancer or clinical depression or even something as quotidian as a breakup would leave comments for Castellano, letting her know how much she helped them. Dalton has noticed that watching her videos seems to make viewers feel better about their own lives. “When you see somebody whose battle is so over-the-top, so beyond what you’ve experienced, you realize that you can get through your own struggles,” she says. That sense of perspective is helpful, even necessary, for viewers. “Many girls worry about a bad hair day,” says Peg O’Connor, Ph.D., a behavioral health expert and professor at Gustavus Adolphus College in Minnesota, “but there’s a huge difference between a bad hair day because your bangs are too long and a bad hair day because clumps are falling out.”

Amid the whirlpool of reactions that come with receiving a cancer diagnosis is a feeling of inexplicable chaos, like your life is happening at random, and there’s nothing you can do about it. The ability to positively impact their followers makes the experience feel less senseless. “It helped me feel like the hard times were counting for something, that they weren’t just happening for no reason,” Alkobey says.

“There’s a huge difference between a bad hair day because your bangs are too long and a bad hair day because clumps are falling out.”

Equally empowering has been the simple act of taking their stories into their own hands. For the patients who are still minors, the decisions being made about their health aren’t entirely up to them. Creating videos is one way of maintaining some control. As Dalton describes, “Even though there were so many terrible things happening, with YouTube, I could make the terrible things into a video, into art. I could share it with people in my own way. That helped me cope.”

Dalton films her videos on a DSLR camera, and the footage is crafted with jump cuts, close-ups, music, and narration. Her films have an artistry to them—an intention. Videos like Dalton’s allow the creator to gain “autonomy and agency,” Dr. O’Connor observes, and the viewers get to see a full-blown individual, not a bedridden invalid. “The young people in these videos emerge as interesting, thoughtful, typical teenagers, who have some of the same concerns as others who are not sick,” she says.

Claire Wineland, a 20-year-old woman battling cystic fibrosis, lives on her own in Los Angeles, is financially self-sufficient, and runs her own foundation called Claire’s Place, which offers support to families living with CF; it’s important to Wineland that her viewers witness this. “You never see sick people as functioning humans doing something with their experience of being alive,” she says. “Yes, I have a terminal illness. But does that mean my life can never amount to anything? It’s really important for sick people to know: You’re more than just someone sitting around waiting for your body to fail.”

Of course, no matter how sick you are, how much sympathy and compassion you deserve, internet fame inevitably comes with negativity. While the majority of comments are supportive, these women do receive hate. Galls remembers a comment suggesting she was faking her illness and that she should go to jail for what she was doing. “I wish that were the truth,” she says.

Raigda Jeha, a Canadian makeup artist and terminal stomach cancer patient, was given only three months to live when she was diagnosed in 2015—she has been managing her illness holistically and creating uplifting vlogs about the experience since. But when she put up her first video, a guy commented, “‘Why are you so worried about your makeup? You’re dying,’” she recalls. “And then you get the trolls saying, ‘I have a cure! Buy this!’ Or people getting upset with me for pushing alternative medicine, which I’m not.”

There’s also immense pressure to post regularly. “When you get big on YouTube, you’re dancing with the devil a little bit,” says Wineland. “In order to keep up views and give people what they want, you have to produce a lot of content, and it’s hard to make meaningful videos when you’re posting so much.” At 17, Wineland launched her CF-awareness YouTube channel—featuring videos such as “What It’s Like to Be in a Coma” and “Dying 101”—and the teen’s exuberant personality and dark humor quickly earned her almost 200,000 subscribers.

“If you Google my name, the top thing to come up is ‘Is Claire Wineland dead?’ Which, I mean, is understandable.”

But in 2016, Wineland went about a year without uploading due to a squabble over ownership of her account (she initially hired a company to edit and manage her videos). Because viewers like Wineland’s are so invested in these stories—which are higher stakes than most—panic strikes when accounts go un-updated. Wineland recently launched a new version of her channel (which she owns and manages herself), but click on any of her old videos, and you’ll find dozens of comments asking what happened to her. “If you Google my name, the top thing to come up is ‘Is Claire Wineland dead?’” she says. “A lot of my followers think if I’m not posting, I’ve died. Which, I mean, is understandable.”

For sick YouTubers, the obligation to respond to the hundreds of daily comments from viewers—some of whom are seeking serious health advice—can be overwhelming. At 43, Jeha is part of a smaller faction of cancer vloggers from a different generation, a generation that didn’t grow up with screens. For them, the attraction is often as much about exchanging information as it is about seeking an emotional connection, explains Dr. O’Connor. Inspired by how proactive and knowledgeable Jeha was about her illness, a friend encouraged her to start her channel as a way to help other patients. In contrast to Mary Dalton’s highly curated videos and Racheli Alkobey’s action-packed vlogs, Jeha’s videos are simple—she films on her phone, selfie-style, with minimal editing. In them, Jeha is usually seated, casually chatting to her viewers about what foods and treatments have been working for her lately. She advises curious viewers to do research and take an active role in their own treatments.

Like the people they’re watching, most of the viewers are young; this may be the first time they’re seeing someone with a serious illness. It’s inevitable that many viewers end up internalizing the ups, downs, and losses, as if they knew these people in real life. “It may be the loss of someone they never met, but the loss is real,” Dehorty says.

This isn’t necessarily a bad thing. Watching an imperfect life unfold online can be healthier than constantly comparing yourself to the staged, overly filtered posts that saturate social media. Witnessing the life, trials, and possible death of a person on YouTube can force followers to look beyond their own circumstances.

Despite the heavy subject matter, the relationship between these vloggers and their viewers is overwhelmingly positive. In fact, for some it’s connected them to friendships and experiences that have made the inauspicious situations almost worth it. “YouTube is like a little family,” says Alkobey, who went into remission 18 months ago, is getting married this year, and met all of her bridesmaids-to-be through social media. Dalton, too, found her best friend, an 18-year-old cystic fibrosis patient who lives across the country, thanks to YouTube. And many of Talia Castellano’s closest online pals are still in touch with her family, who created a childhood cancer foundation called Talia’s Legacy in her memory. This has been healing for them. “We’ve watched her fans grow up online, and they continue to tell us how much they miss Talia, how much she changed their lives,” says Mattia. “They come to Florida to visit us; they go to Talia’s Legacy events. We’re so grateful to have those people in our lives.”

In a way, YouTube has allowed people like Castellano to cheat death. At any time, her family and followers can go back and watch her hundreds of videos as if she were still here, dotting her eyelids with fluorescent teal shadow and flashing an ear-to-ear smile. It’s something Jeha has thought about a lot recently. “I’ve got a large family, and these videos are something I can leave behind,” she says. “They can watch them and see I was happy. I was laughing. I was alive.”

“They can watch my videos and see I was happy. I was laughing. I was alive.”

In an ideal world, these women make full recoveries and can refocus their channels on stories of survival. Thankfully, Alkobey was blessed with a positive outcome, as was Mary Dalton, who is now a cancer-free high school senior. She intends to pursue a career in film production. “YouTube totally changed my perspective on what I want to do when I get older,” she says.

Vloggers like Sophia Gall and Claire Wineland aren’t as lucky—they know they won’t survive their illnesses. But considering the circumstances, they’re thriving, and their channels have something to do with that. Gall continues to make inspiring videos for thousands of fans, hoping one day her content will produce enough money (either through ad revenue, or perhaps a line of merchandise inspired by her channel) to give back to childhood cancer research. Wineland, too, has big plans to keep making videos on her new channel and growing her foundation.

“When you really understand that you can lose everything, it makes you want to live—to create something,” Wineland says. “It makes you want to be a part of the world. I mean, why not do something big with your life while you still have it?”

To learn more about Claire’s Place  or to make a donation, click here


Blog & Events, Press

Thrive Event Raises Over $150K for Claire’s Place Foundation

November 8, 2017

Los Angeles, CA, Nov. 08, 2017 (GLOBE NEWSWIRE) — Claire’s Place Foundation, a non-profit organization providing support to children and families affected by cystic fibrosis, thanks the founders of Thrive: Make Money Matter and their attendees for raising over $150,000 to support their Extended Hospital Stay Fund.

Thrive Co Founder Sanja Hatter, Claire’s Place Foundation Fundraising Chair Kathie David, Executive Director Melissa Yeager and Founder Claire Wineland

“I was invited to speak at Thrive 2017, which was such an honor. I had no idea the event would change my life,” said Claire’s Place Founder Claire Wineland. “While on stage Thrive Co-Founders Cole and Sanja Hatter surprised me with a personal donation to support my foundation. They then called upon the audience to open their wallets. In just minutes we raised more money than we have ever raised for Claire’s Place! The funds raised will help thousands of families affected by cystic fibrosis pay their bills. I can’t thank Cole, Sanja and everyone in attendance enough. I am overwhelmed by their generosity.”

“Claire is a beautiful light in our world; I’m so honored to know her, support her, and call her a friend,” said Thrive Co-Founder Cole Hatter. “The work she is doing is amazing, and I know the impact she will make in the world is only just beginning. Thrive was a great start, looking forward to continue to support Claire in leaving her legacy.”

The funds raised at Thrive 2017 will support Claire’s Place Foundation Extended Hospital Stay Fund, a special cache of funds available to families with children living with cystic fibrosis that are experiencing financial distress due to a hospital stay of at least 14 consecutive days. The grants are paid directly to third parties on the families’ behalf to cover basic necessities such as mortgage, rent and utilities so that the parents can focus their energies on being with their child in their great time of need.

“Raising the money for Claire and her foundation on that stage is my favorite moment of Thrive,” said Thrive Co-Founder Sanja Hatter. “It is a highlight in my life that I will never forget. I am so grateful for Claire, her outlook on life and the difference she is making helping others living with cystic fibrosis.”

“When I first connected with Cole and Sanja I was so excited to share the opportunity with Claire and the foundation,” said Claire’s Place Foundation Fundraising Chair Kathie David. “In my wildest dreams I couldn’t have imagined what would later happen at Thrive. It was one of the most exciting and rewarding moments of my life and I’m humbled by Cole and Sanja’s vision and the generosity of the Thrive tribe. The money raised will go a long way to help our families.”

Thrive Co-Founder Cole A Hatter Photo Credit: @tostistudios

To learn more about Thrive: Make Money Matter, please visit: And, to assist Claire Place Foundation’s mission in helping children with cystic fibrosis, please visit:

About Claire’s Place Foundation, Inc.

Claire’s Place Foundation, Inc. is a 501c3 non-profit organization providing support to children and families affected by cystic fibrosis (CF). Claire’s Place Foundation is named in honor of Claire Wineland, now a teenager, who has been living with CF her entire life. The foundation provides grants to families affected by CF, offering both emotional and financial support. A young author of bestseller “Every Breath I Take, Surviving and Thriving with Cystic Fibrosis,” Claire’s unique inspirational model for people living with this disease has led her to be a TEDx Speaker and receive multiple awards including Seventeen Magazine’s “17 Power Teens” of 2016, Fox Teen Choice Awards 2015, Gloria Barron Prize for Young Heroes, Southbay Magazine’s “Top 10 South Bay Teen”, Looking Beyond LA’s “Soaring Spirit Award,” and winner of Los Angeles Business Journal’s “Small Nonprofit of the Year.” She has been featured on Inside Edition, The Dr. Oz Show, CNN, 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

Claire Wineland Photo Credit: @tostistudios

About THRIVE: Make Money Matter

Thrive: Make Money Matter is a top rated business conference that encourages and equips ‘for-purpose’ businesses to make an impact in their local economy and around the world.  In addition, Thrive: Make Money Matter offers resources and a private networking group for business owners.  The next conference will be held September 15-17, 2018 in Las Vegas, NV.  For more information visit or call 949-534-2653

Cole A Hatter, Claire Wineland, Sanja Hatter, Melissa Yeager Photo Credit: @tostistudios


August 2, 2017 Goes Back to His Roots During WORLDZ Titan Award Speech

Hollywood Reporter
10:49 AM PDT 8/1/2017 by Rachel Ettlinger

Jerod Harris/Getty Images

Brands like 20th Century Fox, VICE and Reddit all came together early Monday morning for a two-day summit to learn from and network with peers across different facets of the business world.
The Loews Hotel in Hollywood became a playground for young and established business hopefuls and executives from all over the world at the WORLDZ Chapter 2: Losing Sight of the Shore conference, which hosted brands from Facebook to iHeartMedia.
More than 150 speakers, ranging from Caitlyn Jenner to Shaun White and keynote, took over the two-day cultural marketing summit.
“I went to an all-white school and grew up in a Mexican neighborhood, but the whole thing was to dream your way out,” said, who was given the Titan award during his address for his work founding “I’m not going to pay attention to my nightmares, and ignore my dreams. Everyone was like, ‘Oh, I’m going to keep it real,’ and I was like, ‘I’m going to keep it imaginative.'”
The Hollywood Reporter and Billboard’s president, John Amato, also made an appearance at the event’s opening “Meet the Masters” series, where he spoke one-on-one with WORLDZ attendees about the two media brands’ missions and goals for the future, as well as to give advice to other business professionals.
“The future of what media is and how all this stuff is converging, it’s like all these companies in the world — literally, Apple, Amazon and Google — all have serious music initiatives,” Amato said. “Those same companies all have serious entertainment initiatives and being the head of the biggest music and entertainment media brands in the world, I think, just makes everything so much more interesting.”
Neon posters guided more than 1,600 WORLDZ attendees, representing 40 different countries, around every corner with faces of the “masters” of the organization, such as Claire Wineland of the Claire’s Place Foundation, Sebastian Terry of, CEO of Vaynermedia Gary Vaynerchuk, and the co-founder and president of Red Interactive Agency, Donny Makower, who all also spoke at the conference’s opening keynote.
While opening the conference at the keynote address, Roman Tsunder, CEO of PTTOW! and a WORLDZ co-founder, discussed why he created the conference for business officials of all levels in the first place.
“It’s our greater intention to help make your journey,” Tsunder said in an address to the audience. “The reason we call it WORLDZ is because we want to take you and your world, and collaborate with you and your world to create the most inspiring outcomes.”


This girl with a terminal illness is using social media to normalize death

August 2, 2017

This girl with a terminal illness is using social media to normalize death

By Nathalie Basha


December 04, 2016 09:55 PM EST

Claire Wineland is 19 years old, but she already has a very close relationship with death. She has cystic fibrosis, a chronic and progressive disease that will eventually end her life.

But Wineland is using social media, and her very positive attitude, to normalize death and illness. Her message is that you can not only have a great life despite pain and suffering but because of it.

“The people who have been through the most are the people with the most to give” ~ Claire Wineland

She uses herself as an example. Cystic fibrosis is an all-consuming, terminal disease that has caused her to spend a third of her life in and out of the hospital. It creates an overload of mucus in the body that coats all the internal organs, and over time, causes them to shut down.

But she’s not only happy, she’s thriving. She lives a very full life and she credits CF for giving her the ability to see the beauty of life through her pain. She encourages her followers to find the same beauty.


She is vivacious, laughs easily and breaks off into passionate tangents, and she is exceptionally eloquent. Now, she’s also a professional speaker. Her inspiring talk at Zappos is excerpted in the story, but is worth a full listen.

Claire and her family have started a foundation to help other children living with CF. Claire’s Place Foundation gives grants to provide financial support to families living with cystic fibrosis.

Claire’s life expectancy is up in the air. It’s been pushed back from 10 years old, to 15, and now it’s the early-to-mid 20’s. She could die next year, or she could live for decades more. That part depends on the medical advances made for CF (there is no cure, only management of the symptoms) and Claire’s own determination to work on her health.
In the meantime, Claire says she’ll continue to use social media, public speaking and her foundation to help people live their best lives.
Check out Claire’s Instagram, YouTube  and  Twitter accounts for some serious inspiration.

Nathalie Basha
Nathalie Basha is Circa a Multimedia Journalist for Travel and Leisure, based out of Los Angeles


Living while dying: ‘Little Buddha’ wisdom from a terminally ill ‘goofball’ by Jessica Ravitz

July 5, 2017

Living while dying: ‘Little Buddha’ wisdom from a terminally ill ‘goofball’

Updated 10:42 AM ET, Wed July 5, 2017

Venice Beach, California (CNN)As a small child, she played hide-and-seek with nurses, ripped out IVs to race around the hospital floor naked and left an explosion of glitter in her wake.
As a teen, she got boys to carry her uphill when she was tired, taught her best friend how to flirt and watched her doctor squirm as he gave her the safe-sex talk.
And as an adult, Claire Wineland has continued living out loud, even as her body fails her.
Claire, 20, has cystic fibrosis, a genetic and terminal progressive disease that’s landed her in the hospital for a quarter of her life. Ask what’s on her bucket list, and she’ll say she doesn’t have one.
Fixating on a checklist of goals before she goes “sounds exhausting,” she says, especially “when you’ve been dying your whole life.” Instead, she’d rather focus on doing all she can in each moment.
It’s a sort of wisdom that makes some describe this California free spirit as “an old soul” or “a little Buddha.”
I meet Claire in a Venice Beach café; everyone who works there seems to know her. She’s on a mission to normalize sickness, push back at those who pity her and have a meaningful life for however long it lasts. Although she certainly has her down days — “Who doesn’t?” she notes — this self-described “goofball” tackles life with humor and the sort of charisma that draws people to her.

Claire Wineland smiles broadly at a comedy roast to raise money for Claire's Place Foundation in July 2015.

Claire Wineland smiles broadly at a comedy roast to raise money for Claire’s Place Foundation in July 2015. Photo Credit: Avery Ward

“I can’t just expect people to know what to say,” she says, “I have to make them see me as more than my illness.”
She’s been working at it on a number of fronts: In high school, she created a series of videos that went viral and penned pieces for national audiences, including one for CNN. She’s appeared in magazines, on television shows and at teen award ceremonies. She’s heading up a foundation, writing a book — she promises it’s not “another happy sick person book” — and packing in as much as her 5-foot-2, 95-pound frame can handle.
Through it all, she gives public talks. On this day, that’s at a TEDx event in Encinitas, a beachside community 100 miles south of her apartment in LA’s Venice Beach.
We’d arranged to take the train down for the event. But she’d been fighting a fever as high as 103 the day before, the result of one of many infections her body continuously fights. When I offer to drive instead, she seems relieved. I am, too.
She’s chatty and bubbly for most of the two-plus-hour trip, until she feels the fever coming back and curls up in the passenger seat for a nap. The only sound from her now is an occasional cough and the pumping of a portable oxygen concentrator, which gives her the air she needs without the burden of a tank. When I glance over, I spot a tattoo on her left ankle: the “thumbs up” logo from “The Hitchhiker’s Guide to the Galaxy,” with the phrase “DON’T PANIC.”
But I start to do so when she wakes up and says her lungs feel “funny.” At the venue, she makes her way to the “green room,” where she sits, eyes closed, willing stomach pains to subside, trying to pull it together. She’s set to go on in 20 minutes, and I’m afraid she won’t make it.

More than a sick kid

She’s been riveting audiences since she was 14, when she first stepped on a stage in a new ruffled dress. When I picked her up at her apartment, she wore faded black jeans and a black T-shirt that read “Sexual Intellectual.”
“Life is too short to not be yourself,” she said.
Ever since she was little, she found it strange how people treated her. They’d peer down with sad eyes and say, “I’m so sorry.” It was a statement she heard so often, it was hard not to internalize. And in a society consumed with being healthy, she grew confused.
“What happens when you have an illness where you’re never going to be healthy?” she asked. “Does that mean I’m never going to have a life? Am I never going to do anything or be anything other than a sick kid?”
Claire is one of 70,000 people worldwide, 30,000 in the United States alone, who live with cystic fibrosis, the Cystic Fibrosis Foundation estimates. To have the disease, both parents must be carriers of the CF gene. If they are, there’s a one in four chance their children will be born with the disease.
Cystic fibrosis leads to an overabundance of mucus, which blocks airways and traps infections in the lungs, complicates digestion, affects the pancreas and other organs and, with time, causes respiratory failure.
At last count, Claire says, she’s had more than 30 surgeries. On a daily basis, she takes about four dozen medications, including self-administered shots for her CF-related diabetes, and might spend up to six hours on breathing treatments.
She dons a vest to shake her lungs and loosen mucus, and uses a nebulizer to blow in steam and inhale medicines. She can cough up enough mucus each day to measure in cups. She gets admitted to the hospital for regular tuneups and intensive treatments.
All the while, with her lung capacity diminished, her body works harder to breathe.
“It’s like I’m jogging 24/7,” she said. She must consume as many as 5,000 calories a day to maintain her weight — forget about gaining any.
That explains the two large pastries she ordered for lunch when we met, and the French fries she got to go. And it’s why her younger sister, Elanore Nordquist, 13, used to get miffed whenever she wasn’t allowed a second piece of cake but Claire could always have as much as she wanted.
Even with this carte blanche for consumption, Claire takes in 2,000 calories through a feeding tube as she sleeps, while a machine helps her breathe so her body can rest.

Pineapples and mushrooms

Claire can laugh at the absurdities in her life. She tells stories of strangers who’ve approached her with unsolicited prescriptions for cures. The produce section of Whole Foods is ripe for material, she says. One shopper told her she simply needed to eat more pineapple. Another said all she required was a mushroom cleanse.
And then there was the homeless guy outside a gas station who insisted that the mind can change reality and that she didn’t need to be sick. She remembered thinking, with a laugh, “If that’s true, why are you homeless?”
But it was a friend who, when Claire was 11, changed her outlook by handing her a book he insisted she see.

Claire has always welcomed chances to escape Los Angeles and breathe cleaner air. Here, she visits Vancouver, British Columbia, several years ago.

Claire has always welcomed chances to escape Los Angeles and breathe cleaner air. Here, she visits Vancouver, British Columbia, several years ago.

It was Stephen Hawking’s “A Brief History of Time.” The cosmology book blew her young and curious mind, and she rushed to the library to learn more about its author. Only then did she find out that Hawking had ALS, or Lou Gehrig’s disease, and was terminally ill, too.
Until that moment, Claire — an avid reader — had yet to find any role models, examples of sick people doing remarkable things.
“His body was completely failing, but he was contributing something incredible to society,” she said. Hawking’s diagnosis did not define him. “He transcended it.”
In him, she found inspiration, though it would take a steep downturn for her to see her way up.


The sicker a person with cystic fibrosis gets, the more work they need to do to stay relatively well — and the harder it is to do that work. It’s enough to make some “CFers,” as Claire calls them, stop trying.
She gets it because she was once there.
“It’s not that I wanted to die,” she said. “But I didn’t know how to live.”
At 12, she feared that she was surviving just to survive.
During a hospital stay, she had become close friends with Vanessa, another girl with cystic fibrosis. CFers aren’t supposed to be together, as they carry bacteria that can be deadly if shared. But these two girls connected at a safe distance, doing art projects across the room while wearing protective masks. They made disco balls for the nursing station out of crushed CDs and glue, shared an understanding and a sense of humor and, over the course of a year and a half, a deep friendship. And then, Vanessa died.
Bereft and facing a lifetime of treatments, Claire asked herself, “Why am I doing this?”

Claire and her sister, Elanore Nordquist, cuddle the night before Claire moves out of the house. One of the things Claire appreciates most about Elanore is that she's never treated Claire like a sick person.

Claire and her sister, Elanore Nordquist, cuddle the night before Claire moves out of the house. One of the things Claire appreciates most about Elanore is that she’s never treated Claire like a sick person.

So she began to lie, saying she took her medications and treatments when she didn’t. For a year, her health slipped, and she said no one could figure out why. Claire, who’d always peppered her doctors and nurses with questions, knew the language and how to trick everyone.
The day after her 13th birthday, a straightforward surgery to deal with acid reflux spiraled into chaos. She contracted a blood infection that attacked her lungs. She could feel them failing.
As her oxygen levels plummeted, she began hallucinating. In a moment of clarity, she thought, “I don’t want to actually die. I want to see what happens in life. I want to see where it goes.”
She was placed in a medically induced coma, intubated and hooked up to an oscillator, a machine that gently puffed air into her fragile lungs. No child with CF had successfully come off an oscillator, doctors told her parents. Claire says she was given a 1% chance of survival. She flatlined twice.
Her little sister was 6 at the time. Elanore remembers a social worker talking to her before she went in — “all sanitized and in a gown” — to see Claire.
“They told me to say goodbye,” Elanore said. “They told me ‘she’s probably not going to wake up.’ “

A winter wonderland

There was no white light. Instead, Claire transported herself to a place she’d never been: Alaska.
Her subconscious journey began beneath ice water, she says. When she surfaced, she peered up at a mountain of snow. She sat amid ice-crystal-covered pine trees, floated on ice sheets while looking up at stars and hung out in a woodland house where animals streamed in to visit her.

After her coma, Claire traveled to Sitka, Alaska, the place she believes she subconciously visited.

After her coma, Claire traveled to Sitka, Alaska, the place she believes she subconciously visited.

Claire remained in a coma for more than two weeks. When she woke up, she learned that her dream world had unfolded while she had been submerged in an ice bath to bring down her fever.
Though conscious again, she couldn’t walk, sit up or hold silverware. She had to wear diapers. Her mom called her “Grandpa,” a memory that still makes her laugh.
“My body had no reserves left,” she said. “It was kaput.”
In the many months she worked to get stronger, she found renewed purpose.
“I feel like she had a spiritual experience,” said her mom, Melissa Nordquist Yeager. “She came out inspired to help others.”

Finding meaning by giving back

Claire entered the world the way she lives: boldly.
Yeager was overdue to give birth to her firstborn when a routine ultrasound morphed into a scene of terror.
She watched the doctor’s face as he studied the screen. He ducked out and returned with another doctor. They told her that something was wrong with the baby and that Yeager had to be induced immediately.
Claire was born with meconium ileus, a bowel obstruction that is a telltale sign of CF. Her bowel had ruptured, leaving her belly protruded, and she was whisked off for the first of many surgeries.
“The prognosis was five years,” Yeager said, “and that was a maybe.”
Claire spent the next seven weeks in neonatal intensive care. Her father, John Wineland, recalls peering down at his daughter as she screamed amid the medical equipment and tubes. Their eyes locked.
“It’s going to be OK,” he remembers telling her. “We’re in this together.”
Just like that, Claire’s parents, who then lived in Austin, Texas, were jolted from naivete.

Claire has spent a quarter of her life in the hospital, mostly at Long Beach Memorial Medical Center in California, where her medical team is just like family.

Claire has spent a quarter of her life in the hospital, mostly at Long Beach Memorial Medical Center in California, where her medical team is just like family.

Raising a daughter with CF “has consumed most of my attention, most of my life,” said Yeager, who now lives in Seal Beach, California. She and Wineland, of Santa Monica, never married and decided to split when Claire was 3, but they remained close friends and have continued to tackle Claire’s care together.
With Claire in the hospital two or three months a year, Yeager never felt that she could build a career. She lost a handful of jobs and quit others as hospital stays dictated. She’d take the day shifts with Claire while Wineland took nights. He’d hunker down next to Claire in the hospital, watch movies with her at 3 a.m. when she couldn’t sleep, and head to work in the morning.
All the while, Claire’s parents — and, by extension, Claire — were surrounded by friends. They’d come to the hospital with meals, stick around when her parents couldn’t, help rally the family and manage their lives. They also helped make Claire more outgoing and sociable, her dad says.
Claire grew up knowing that she and her parents were fortunate, that too many families lacked the support they had. After waking from her 16-day coma, Claire proposed starting an organization to offer financial and emotional help to others navigating life with CF.
Whether it’s covering rents, mortgages, insurance premiums or car payments, Claire’s Place Foundation aims to relieve pressure when CFers are hospitalized so families can focus on what matters most. Not long ago, it even helped find an apartment for a homeless CFer who was floating between shelters.
What started as “a side project to celebrate (Claire’s) life and survival became a passion of all of ours,” said Yeager, who serves as the executive director.
And for Claire, the foundation changed everything.
“All throughout my teenage years, I was able to hold on to the foundation as a means to remind me that I had value,” she said. “It’s important for people who are sick to feel empowered. It gives them reason to take care of themselves.”

Don’t touch her sushi

In high school, Claire launched The Clairity Project, a website offering insight into her life, including videos that became popular on YouTube.
She offered honest talk with a smile about dying, life expectancy, even the perks of being sick. She gave tips on how to interact with sick people, answered questions she’s often asked and introduced her family. She and her father, on guitar, performed together, singing Bob Dylan’s “Knockin’ on Heaven’s Door.”
She stepped away from making videos after no longer seeing eye-to-eye with a production company that got involved. Instead, she decided to focus on what she could control and feel good about: the foundation and her speaking engagements.
She also embarked on a new phase: Since graduating high school, she’s lived on her own with a roommate in Venice Beach.

A 2015 trip to Europe with childhood friend Alicia Schomer, who says Claire has changed her: "I'm not as terrifed of the thought of death anymore, but I am terrified of not living life to the fullest."

A 2015 trip to Europe with childhood friend Alicia Schomer, who says Claire has changed her: “I’m not as terrifed of the thought of death anymore, but I am terrified of not living life to the fullest.”

It can be hard for any parent when a child leaves the nest, but for Claire’s mom, the transition has been even more fraught.
Yeager knows how much work goes into Claire’s care and worries that her daughter won’t ask for help.
“I’m happy for her, and I know she’s capable,” her mother said. “But I just see how sick she’s getting.”
A year ago, Claire was at 50% lung capacity, Yeager says. Today, she’s at 30%. She must take antibiotics to beat back recurring infections, which have become resistant to most of the drugs.
And when she turned 18 and could decide for herself, Claire announced that she wasn’t interested in being on the list for a double lung transplant.
“I had to be honest,” she said. “It’s not for me and never has been.”
Though transplants can extend a life, they’re no cure. She’d have to live on steroids, which she hates taking. She’d run the risk of developing new issues when she’s used to the ones she has. Plus, her body could reject the new lungs.
“And you can’t eat sushi afterwards. That’s a no,” quipped Claire, who says she’d spend hundreds of dollars a month on sushi alone, if she could.
She insists that she’s not giving up, though. Instead of opting for a transplant, she’s holding out hope for a cure. If she got new lungs, she says, she wouldn’t qualify for drugs in development. Therapies developed in trials are now helping many CFers, according to the Cystic Fibrosis Foundation, and eventually, with other clinical trials now underway, as many as 95% of CFers could benefit.
Her decision was a blow to her parents. They’ve had to accept that she won’t pursue an option that could give her another 10 years.
“Just think of it as insurance, even if you don’t want to do it,” her mom pleaded at first. “Get on the list so you can change your mind.”
But Yeager, no matter how uncomfortable it makes her, knows to trust her daughter’s intuition.
“She has a relationship with her body that is sacred,” explains her dad, who, like Claire, is a practicing Buddhist. Claire’s thinking, he said: “This is the body I came in with. This is the body I’m going out with.”
And as her father, “I have to live with it.”

Claire, unplugged

Claire is Wineland’s only child. He says she’s helped him become a better person.
He’s learned “to not be afraid of what hasn’t happened yet” and believes that Claire is exactly how she’s supposed to be. He’s learned to “love what is.”
At 51, he finds comfort in meditation and yoga, which Claire practiced for years, before her coma.
Wineland is a life and relationship coach. Together, he and Claire have explored ways to grow spiritually. When Claire was 10, he says, she walked on fire at a retreat run by motivational speaker Tony Robbins. He’s had to figure out healthy ways to deal with pain, even to see the beauty in it.
“When you don’t know what’s going to happen to your only child,” he says, “it can be pretty debilitating.”

Claire's parents, Melissa Nordquist Yeager and John Wineland, split when Claire was 3 but remain close friends and partners when it comes to her care.

Claire’s parents, Melissa Nordquist Yeager and John Wineland, split when Claire was 3 but remain close friends and partners when it comes to her care.

Humor has also helped him cope. When there’s a long line at a restaurant, he says, he’ll sometimes send her to the front of the line coughing to play “the sick-kid card.”
Yeager too marvels at what Claire’s done for her. She says her daughter’s aura and energy lift those around her, making Claire “a force of nature.”
During a recent hospital stay, mother and daughter were talking about death, a subject they don’t shy away from.
“After you die, you’re closer to everyone you love, because you’re part of everything,” Yeager remembers Claire saying. The words were a gift, a reminder that her daughter’s essence will remain always, even after she’s gone.
“If and when it does happen,” Yeager said, “I’m never going to forget her saying that.”
Elanore, Claire’s only sibling, is more no-nonsense. She never treated Claire differently, a fact Claire has always treasured.
“She couldn’t care less that I was sick, which I loved,” Claire says. “It was refreshing.”
When she was younger, Elanore cared so little that sometimes she’d even unplug Claire’s oxygen without telling anyone.
“We wrestled a lot,” Claire remembers with a laugh. “She’d unplug it to make me tired so she could win.”
She gets how sick Claire is today. Still, she doesn’t see Claire as a sick person.
“She’s just a person,” Elanore says. “She’s not all-knowing. She’s still figuring it out, like a lot of people. … She needs the freedom to be a 20-year-old.”

‘It’s OK to feel pain’

Though Claire had been attending Santa Monica College, part of her freedom meant putting school on hold.
“Truth be told, I probably wouldn’t make it to graduation,” she said. “I feel my body changing, and I had to make an executive decision.”
Instead, she’s focusing on what she can accomplish now — including a new partnership with Zappos for Good to make hospitals more, well, hospitable. She’s designing the renovation and decoration of a playroom and intensive care rooms at the Children’s Hospital of Nevada at UMC in Las Vegas, which Zappos will pay for. The partnership began after Claire addressed about 2,000 people at the company in November.
Calling her “super inspiring,” Zappos CEO Tony Hsieh said, “I’m pretty sure she brought tears to most of the people in the room.”
What her Zappos audience didn’t know that day was how awful Claire felt.
Over the past couple years, she’s had more bad days than good. And in Claire’s world, that can’t stop her. If she bowed out whenever she felt under the weather, she says, she’d never accomplish a thing.
It’s like that again today as she sits in the green room in Encinitas, the TEDx audience awaiting her talk.
The venue is a large meeting space behind a vegan restaurant. Attendees sip kombucha on tap and exchange hugs that last extra beats. When someone asks whether there’s a yoga instructor in the room, they raise their hands en masse. Outside in the hallway are pieces of self-help literature, an announcement for a festival “dedicated to the Divine Goddess” and business cards for a spiritual medium.
When I peek in on Claire, I grow worried. The room is dark, and her eyes are closed, her arms folded across her belly. I fight every protective instinct to whisk her off and take her home.
Instead, she rallies.
As the emcee introduces her, Claire stands tall, showing no sign of pain or discomfort. She strides toward the stage amid applause, her smile wide. If not for the pumping oxygen concentrator slung over her shoulder, strangers might not suspect that anything’s wrong.
She jumps in and talks about the fear she had when she first spoke publicly, the guilt she felt whenever she landed in the hospital, the isolation CFers often feel. She also speaks of what inspires her and her understanding that illness shouldn’t stop anyone from living proudly.
“It’s OK to feel pain and experience it,” she says. “I’m not trying to fix myself. My suffering has given me so much.”
For about 18 minutes, she sets out to change how people think.
When she’s done, the crowd stands and applauds. Some audience members hoot and holler. As she weaves through the crowd toward the exit, I chase after her, overhearing whispers like, “What a gem.”
It’s clear people would like to talk to her, hug her, corner her for conversation. She shoots me a glance, though, that says, “Let’s get out of here.”
Claire has given all she can, and she knows she’ll pay a price.

The price

In the weeks that follow, Claire can’t shake that infection. Then, in mid-June, an ambulance rushes her to the ER: Her fever is back at 103, her heart rate is at 185, and her white blood cell count is 30,000. Claire’s oxygen saturation levels are falling, a sign of lung failure.
Not since the scare that landed her in a coma six years earlier has the situation felt so dire, her mother says.
For a few days, Claire only gets worse. She’s transported to Long Beach Memorial Medical Center, where the staff feels like family. She has sepsis and a severe case of pneumonia and spends a week in intensive care. Doctors come close to putting her on a ventilator when one of the only two antibiotics that still work for her kick in.
“I thought this was it,” Yeager says. “It was an eye-opener for all of us.”
It’s too early to know how much of a toll this setback will take on Claire, who is expected to head home from the hospital Wednesday.
“We think of Claire as invincible,” her mother says, “and this was a reminder.”
A reminder of how important it is to live each moment fully. A reminder of the lessons Claire still hopes to teach before it’s too late.