Remembering Claire Wineland, Cystic Fibrosis Advocate 

The rare disease advocacy community is mourning the loss of a wonderful voice, Claire Wineland, who passed away Monday after her battle with Cystic Fibrosis.

Claire suffered a stroke on Aug 26 after undergoing a nine-hour lung transplant surgery, and her family made the decision to take her off life support. Claire was 21.

What is Cystic Fibrosis (CF)?

Cystic fibrosis (CF) is a genetic condition that causes progressive respiratory and digestive system damage. Someone with CF has thick, sticky mucus, versus “healthy” slippery mucus, which builds up in their system. That build-up can clog airways, trapping bacteria, leading to breathing problems, frequent infections, lung damage and respiratory failure.

The median survival age is approximately 40. To read more about CF click here. 

Here is a portion of the statement from the advocacy organization Claire founded at age 13, Claire’s Place Foundation:

Last night at 6:00pm, Claire Wineland our inspirational founder passed away. She was not in any pain and the medical staff said it was the most peaceful passing they had ever witnessed.

She suffered a massive stroke on August 26th after a successful double lung transplant. The stroke was caused by a blood clot. After a week of intensive care and various life saving procedures, it became clear that it was Claire’s time to go.

Claire was something of a celebrity in the inspirational entrepreneur world. She was a candid Youtuber, sharing her triumphs and struggles with the world – as well as a motivational speaker, garnering much deserved praise for her 2017 TED Talk.

Her legacy will live on, and judging by the response, we are already seeing that in action.

Of note, CNN shared this wonderful tribute to Claire, which in part reads:

A quarter of Claire’s life was spent in the hospital. The medical team that tended to her became family. She played hide-and-seek with nurses and left explosions of glitter in her wake. She watched one of her doctors squirm as he gave her the safe-sex talk. She took great care to decorate her hospital room so it felt and looked like home.
So while we mourn with the rare disease community on her passing, we also celebrate the brave and impactful work she did for the CF community and for patients everywhere.