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Claire Wineland, Founder of Claire’s Place Foundation, Inspired People Living with CF and Other Difficult Diseases to Live Their Best Lives

 

In Memoriam

Claire Wineland sadly passed away on September 2, 2018. In her life, she was an inspiration to members of the cystic fibrosis community and the thousands who heard her speak and followed her on social media. We continue to share this story to help keep Claire’s memory alive and to support the good work of the Claire’s Place Foundation. Vertex sends its heartfelt sympathies to Claire’s family and friends.


As a young child, Claire Wineland felt keenly aware that many people saw her life as a tragedy. She endured daily treatment regimens to keep her lungs clear of mucus, swallowed multiple pills each day that helped to keep her alive, and was hospitalized at increasingly regular intervals. Her cystic fibrosis (CF) appeared so all consuming that it was difficult for anyone to see past it. 

And then, at age 13, after a relatively routine surgery, she was placed into a medically induced coma due to complications from an infection. No one thought she would return from it. 

Three weeks later, she emerged, but with a profoundly new perspective on life.

“I suddenly had this deep understanding that I couldn’t keep doing all of the difficult work that goes into managing my health, solely for the purpose of staying alive,” said Claire, who is now 20 years old. “My 13-year-old self was having an existential breakdown. I didn’t want people to take pity on me any longer. I wanted to do something important with my life.”

Since she was a child, she said, she had absorbed the message that the lives of people who were terminally or chronically ill were somehow less valuable than those of healthy people. She grew determined to spread the message that a person could be sick and at the same time make something of their life.

“The worst thing you can do to a human being is to make them feel like they have nothing of value to give to the world,” she said. “I decided that I needed to be okay with my life in every moment because I might not have my teen or adult years to figure it out.”

Claire told her parents that she wanted to start a foundation to benefit others affected by CF. Observing the community around her to gauge where she could make the biggest impact, she saw that there were a number of families in her hometown of Los Angeles who struggled to get by when their children were hospitalized. 

“After the coma, my mom raised me as a single mom, although my father has always been a big part of my life and still is,” Claire said. “My care had become a full-time job for her and if we hadn’t had such a big family and support network, she would have struggled to take care of us financially. I saw the need for a safety net for families and moms who were going through the same thing.”

In 2011, Claire founded Claire’s Place Foundation with the mission of raising awareness about CF and inspiring others with difficult illnesses to pursue lives they feel are important to them. The Foundation was a launched with a flash mob fundraiser that brought in more than $20,000.

The Foundation today helps families affected by CF by providing “Extended Hospital Stay Grants” to help with mortgage, rent, utilities, and other basic necessities when their children experience a hospital stay of at least 14 consecutive days. 

“Our goal is to never have to turn a family in need away,” said Claire. 

In addition to offering grants, the organization has about ten “Support Families” standing by for newly diagnosed, or isolated, families in need of advice and emotional support. The team is currently hoping to grow this program in hopes of assisting more families in need.

Today, most of the organization’s funding comes from private, small donors across the country, as well as from two main fundraising events each year. 

Claire’s mother, Melissa Nordquist Yeager, serves as co-founder and executive director of the foundation. To date, it has helped a range of people, including a young woman with CF who, following a severe bout of illness, found herself homeless and without a job. They also frequently help single parents with multiple children by paying the cost of rent and childcare when a member of the family is in the hospital. 

In addition to her work with Claire’s Place, Claire wears many other hats. She has been a TEDx speaker, and has won multiple awards including the FoxTeen Choice Awards 2015, the Gloria Barron Prize for Young Heroes, the 2017 Global Genes’ RARE Champion of Hope Award in RARE Disease Awareness; and the 2016 World of Children Youth Award. In addition, Claire was named one of Seventeen’s “17 Power Teens” of 2016, and Claire's Place was named the Los Angeles Business Journal’s “Small Nonprofit of the Year” in 2014. Claire frequently gives motivational speeches, and has been interviewed on television shows including the Dr. Oz Show, Inside Edition and ABC News. 

These days, Claire feels like she’s living her best life, but is quick to point out that she is also coping with end-stage lung disease. She has opted not to be listed for a lung transplant, as the procedure carries the risk of complications. Instead, she is hoping for new treatments that could extend her life. 

“I’ve had to accept that I might not win the battle,” she said. “Sometimes I feel that weighing down on me, but then I try to get into a space where I don’t feel trapped by my circumstances.” 

"When you’re living with a potentially life-shortening illness, it’s like putting a magnifying glass to what it’s like to be alive,” she continued. “You need to ask yourself – what are you going to give to the world?”