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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.

Flatlining

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.
Blog & Events, Press

Press Release ~ Kathie David joins as Fundraising Chair

June 2, 2017

Claire’s Place Foundation, a non-profit organization providing support to children and families affected by cystic fibrosis, today announced the election of Identified Talent Solutions Vice President Kathie David as the foundation’s new Fundraising Chair.

Paul David, ED Melissa Yeager, Founder Claire Wineland and Kathie David Photo credit: Julia Lofstrandt Photography

 

Kathie came to Claire’s Place Foundation by a chance encounter. She was a member of the audience at Claire’s Place Foundation Founder Claire Wineland’s speech at Zappos and Claire’s words enchanted her. “When I heard Claire say, ‘Human beings are so adaptable. We have this incredible gift of taking whatever is thrown at us and making something with it. Everyone is going through something. Big or small, it can affect each and every one of us in a profound way.’ It immediately changed how I view life,” said Kathie. “These words from a 19-year-old girl who has been living with cystic fibrosis her entire life, gave me a moment of clarity through a simple shift in my mindset. I have a choice. I choose to live life with clarity. And it’s made an incredible difference.”

Since then, Kathie has been making a huge impact on Claire’s life and Claire’s Place Foundation. Kathie dedicated her recent bridal shower to raising money for the foundation in lieu of gifts; and her creativity and professional skillset has uncovered new opportunities to raise needed funds to continue to provide grants to families living with cystic fibrosis.

“Kathie is a one-of-kind, her heart radiates around her,” said Claire’s Place Foundation Executive Director Melissa Yeager. “Even though I have known her for a short time, I feel like I have known her for a lifetime. Her kindness is infectious and her professional skills are a huge asset to the foundation. She has already contributed to helping us raise funds and is continually thinking of new ways she can help. We are absolutely thrilled to have her join our board of directors.”

“Being a part of Claire’s Place Foundation means I get to be at the forefront of an organization that is creating positive change,” said Kathie. “Together we will continue to raise awareness and help families who are affected by cystic fibrosis. When someone in your family is sick, it affects the entire family. Help in every form can make a world of difference. I also want to show my daughter what giving back truly means.”

To assist Claire Place Foundation’s mission in helping other children with cystic fibrosis please visit their website to make a tax deductible donation as well as support two summer 2017 bike rides fundraising for Claire’s Place  – RikisRide & Doug’s Cycling USA for Cystic Fibrosis.

 

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 www.clairesplacefoundation.org.

Blog & Events, Press

May is National Cystic Fibrosis Awareness Month: Share A Story & The Facts

May 5, 2017

Laura McHolm, Contributor NorthStar Moving Company Co-Founder

May is National Cystic Fibrosis Awareness Month: Share A Story & The Facts

05/04/2017 02:45 pm ET

How can you help? Use your voice and get involved. Participate in walks and other events to support CF and share the facts on social media and elsewhere. There is a great foundation working to find a cure: the Cystic Fibrosis Foundation as well as, a foundation that supports children and families living with CF: Claire’s Place Foundation. Get involved. Donate. Come to their events.

PopSugar

 

Claire’s Place Foundation, founded by Claire Wineland when she was just 14 years old, is a 501c3 non-profit organization designed to help children and families affected by cystic fibrosis. Claire and was born with CF. In her short life, Claire has undergone more than 20 surgeries and has spent months at a time in the hospital. She survived months in a coma on mechanical ventilation despite the odds and was also a Make-a-Wish recipient. She has 40% of ideal lung function and the doctors have estimated two years left to live. This is not, however, what characterizes or defines her. Claire has dedicated her life work to making a difference in the lives of others living with CF.

Now 20 years old, Claire’s Place Foundation is a way for Claire to give back with hope, strength, and joy. She wants to live with intention and purpose. In her own words, “I know my life will be shorter so every day has meaning.” She strives to find new ways to help the CF community and other children afflicted with chronic illness. Claire’s Place is making a huge impact through its two programs – The Extended Hospital Stay Fund and the Family Support Program. These programs are in high demand and the foundation needs your donations to continue assisting young patients in need. You can meet Claire and support her foundation at her next fundraiser, “Glow Ride,” in September in Hermosa Beach, CA.

To find others ways you can help bring awareness to CF find a local chapter near you. In May and through out the year, let’s share Claire’s story to help find a cure!

Press

Thank you Val’s Pal’s

October 7, 2016

This morning, our favorite radio team did a shout out for Claire’s Place Foundation as part of their “Nissan MYFM Vals Pals” campaign that helps bring awareness and support to Southern California charities.

We thank you for shining a light on our programs that support children and families living with cystic fibrosis!  We will also be competing to win a $20,000 grant sponsored by Nissan to assist even more families in the coming year…stay tuned for the date ~ we will need you all to place your VOTE!

Link to the mp3

1043myfm

Blog & Events, Press

NorthStar Moving Company to Partner with Claire’s Place Foundation

April 11, 2016
We are thrilled to announce a new partnership with NorthStar Moving Company to assist families living with cystic fibrosis in LA County. Thank you NorthStar Moving for your support and generosity!
 IMG_0933

Press Release | Mon Apr 11, 2016 3:07am EDT

Claire’s Place Foundation Receives Free Moving Services from NorthStar Moving for Cystic Fibrosis Patients

LOS ANGELES, April 11, 2016 (GLOBE NEWSWIRE) — Claire’s Place Foundation, a nonprofit organization providing support to children and families affected by cystic fibrosis, is pleased to announce a partnership with NorthStar Moving ® Company, the leading eco-luxury mover in California, to donate moving services to Claire’s Place grant recipients in Los Angeles County that are in need of relocating. Whether it is a need to live closer to treatment or move to a home that meets their health needs, NorthStar Moving will move them for free.

Recently, NorthStar Moving moved a Claire’s Place grant recipient that was undergoing evaluation for a double lung transplant and her disease had progressed to a debilitating state. She could no longer climb the stairs to her second story apartment and was in desperate need of relocating to a more suitable, first story apartment. Within a few days, the NorthStar Moving team coordinated her move around her schedule, packed her belongings and moved her seamlessly into her new place, all as a charitable donation.

“I want to thank NorthStar Moving for their continued support of our mission to provide services to families living with cystic fibrosis and their incredible gift and outstanding effort in regards to our recent Extended Hospital Stay Grant recipient. They certainly ‘moved’ us all with their generosity,” said Claire’s Place Foundation Executive Director Melissa Nordquist. “A mere mention of this family and their team went into action. Living with cystic fibrosis, especially during the end stages, can make even the simplest tasks seem impossible. Their incredible kindness, speedy and professional service has made a deep impression on us as a foundation and on this beautiful girl and her family. We are thrilled to continue this partnership as other families affected by cystic fibrosis in Southern California are in need of relocating.”

“We are truly honored to work with Claire’s Place and help those that are in great need of moving to a home that meets their health needs,” said NorthStar Moving Co-Founder Laura McHolm. “We know that moving is much more than a new home, we move for big life-changing reasons and needs. We are grateful that we can work together to make a real difference for children and families living with cystic fibrosis.”

Claire’s Place Extended Hospital Stay Fund is a special cache of funds available to families with children that are experiencing a hospital stay of at least 14 consecutive days. Extended stays are a financial stress and often the children are in a city far from home. If you know a family raising a child with cystic fibrosis and needs a helping hand please reach out.

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 www.clairesplacefoundation.org.

About NorthStar Moving

Founded in 1994, Los Angeles-based NorthStar Moving® Company has redefined the moving industry as the first to offer eco-luxury moving services, elevating basic moving and storage services to a new unparalleled level of customer service, customized care and environmental consciousness. Honored with more awards for service than any other moving company: “A+” rated by the Better Business Bureau, voted Citysearch “Best Mover,” earned the most five star ratings on Trustlink and Yelp, and recipient of dozens of awards for corporate culture, green practices, community outreach, and growth including multiple “Best Places to Work” awards and ranked on the Inc. 5,000 list for the fastest growing companies in the U.S. for seven consecutive years. The company’s local, long distance and international moving, storage services, and eco-luxury packages have been featured in leading magazines including The Robb Report Collection and on multiple home and design television shows. NorthStar Moving has proven the state-of-the-art way to move is with its red carpet service, recommended by Coldwell Banker Concierge, The Franklin Report, MovingInsurance.com and an impressive list of celebrity clientele. NorthStar Moving’s mission is to exceed their clients’ expectations with graceful customer care and to move service back into what should have always been the ultimate service industry: the moving industry. For more information, please visit www.NorthStarMoving.com or call (800) Ask-Pros (800) 275-7767.

CONTACT:Carrie Callahan
         carrie@nashcallahan.com

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