On September 4, 2018, Claire Wineland lost her battle with Cystic Fibrosis at the age of 21. To read more about her journey, visit CNN.com.
2016 YOUTH AWARD HONOREE
Founder, Claire’s Place Foundation
When Claire Wineland was 13 years old, Cystic Fibrosis caused her lungs to fail. She went into a medically induced coma for 16 days and doctors gave her a 1% chance of survival. Over those 16 days, her family saw an incredible outpouring of support from their community – people arranged for support services to visit them in the hospital, helped pay the family’s bills, anything and everything they could do to ensure Claire’s parents could stay by her bedside throughout the ordeal.
When Claire came out of her coma and heard about her parents’ experiences over those 16 days, she had a profound realization – when a child is sick, especially with Cystic Fibrosis, nothing matters more to them and their family than being able to be together… but often that requires a lot of love and support from others. She knew there were other children and families facing the same challenges as hers, but without the same supportive community. So she created Claire’s Place Foundation, an organization that supports all children living with Cystic Fibrosis and their families.
In the US, more than 30,000 people are currently living with Cystic Fibrosis and worldwide, the number of diagnosed cases is 70,000, with approximately 1,000 new cases diagnosed each year (most in children under the age of 2). The disease requires daily treatments and frequent hospitalizations, and the expenses for families can be considerable.
Claire’s Place Foundation recognizes the need for building supportive communities for families affected by Cystic Fibrosis, as well as the unique challenges to doing this. Through their Support Families Program, they have several families standing by as registered Support Families for newly diagnosed or isolated families looking for support. Parent volunteers provide Families seeking assistance with support and information on how to work through the treatment and care process. These volunteers connect with families via email, phone, and video calls. This matching service ensures that every family that wants it has support.
The Extended Hospital Stay Grant Program addresses the financial stress families face when children with cystic fibrosis have extended stays in the hospital, often in a city far from home. Grants can be used to help pay mortgage, rent, utilities, or any other basic necessities the family has trouble affording while their child is in the hospital for an extended stay.
Claire is also committed to educating the public about Cystic Fibrosis and its effects on children and their families. At the age of just 19 she is an accomplished speaker and has also launched “CF University”, an online resource for children who want to learn more about their disease. It provides everything from definitions of medical terminology to how to advocate for oneself at doctor’s visits.