Our programs were developed in close coordination with our founder, Claire Wineland, other individuals living with cystic fibrosis, cystic fibrosis care givers and social workers across the country. Our aim is to fill the gaps for families and individuals living with CF now. Our programs are all focused on creating a better quality of life for people and their care givers as well as emergency funding assistance during long hospital stays.
We have set up an emergency fund to support our CF Community through the COVID-19 pandemic.
With the newly established National Emergency declared by President Trump, we realize there are many individuals with CF and their families that may be severely physically and financially impacted. Most of the people who reach out to us for support through our Extended Hospital Stay Grant program are already living dangerously close to the poverty line. Most have only one parent who is able to work outside of the home and older CFers are living on SSDI.
We understand the financial stress that can occur when children with cystic fibrosis have extended stays in the hospital, often in a city far from home. Claire’s Place Foundation, Inc. has set up a special cache of funds available to CF patients and families with CF children that are experiencing a hospital stay of at least 14 consecutive days or have experienced within the last calendar year.
If you or your family is in this extended stay position, please apply for financial assistance to help with mortgage, rent, utilities or any other basic necessities by asking your hospital worker to complete a referral on your behalf. Once the referral is received, an application link will be sent directly to you or your caregiver. The number and amount of assistance will be determined by the board of directors depending on the amount of funds available at the time the application and referral are received.
Loss of work and isolation will make it very hard for these families and individuals to get the food, supplies and support they require.
Families seeking assistance will be offered support and information on how to work through the treatment and care process by other parent volunteers. Over the next 5 years, these programs may expand to include actual activities brought to the hospital for children and families to participate in, tool kits, local support groups for families and other groups for youth suffering of cystic fibrosis.
Be sure to check out our program page for many additional resources available to our community.