What an amazing year we have had! Claire fought through three difficult hospital stays, a crazy weight loss scare and a couple stays in the Intensive Care Unit and still managed to speak at Tedx in September, do two flashmob events, interview Zac Efron and others via Positively Positive, do two national TV shows highlighting her work to help families and children living with Cystic Fibrosis, and most recently, helped to launch the Claire Place Foundation in October. This is only possible because of the generous donations of people like you!
In her most recent video, she explains what we are up to at the CPF.
And this year, we are launching three programs aimed at supporting families who live this challenging and heartbreaking disease. The idea is to help them NOW, while there is life to live and experiences to be had. Claire’s most heartfelt dream is to help other children experience the love, support and joy she has experienced over the past year!
You can choose to support one or all of these programs by placing your tax deductible donation at Claire’s Place Foundation.
- Outreach Program
Claire’s Place Foundation is currently developing a web-based information center providing the latest information about cystic fibrosis, links to resources in areas where cystic fibrosis hospitals or centers exist, and an interactive link to a social media
network, such as Facebook, where families in the same areas can communicate with each other, view videos for children by children including Claire, give tips, provide tools for children to cope with the disease, and links to other resources, community conferences, and publications about cystic fibrosis.
Social workers at partnering hospitals will provide families with children with cystic fibrosis information about Claire’s Place Foundation, Inc. Families feeling uncertain and isolated will be offered support and information on how to work through the treatment and care process by staff and 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.
- Dream Trips!
One of the things that Claire has been lucky enough to do is travel! She has been to many of her “dream” destinations over the past year includingAlaskawhere she got to sing in public for the first time.
Another dream of Claire’s was to swim with the dolphin’s in Hawaii, which she was able to realize this past winter, an awesome experience for her and her dad!
Similar to the Make a Wish Foundation, Claire’s Place Foundation helps children living with cystic fibrosis realize their dreams of seeing faraway, magical places. We hope to help at least two families a year, with the long-term goal of increasing that number depending on the amount of fundraising we can do! Any child with cystic fibrosis who has a desire to travel with their family is eligible for a dream trip. Claire’s Place Foundation will contact the child’s treating physician to determine whether the child is medically eligible for a dream trip, based on the medical criteria established by Claire’s Place Foundation. We will also schedule a meeting with the child to determine their needs and their trip desires.
Through a network of volunteers, Claire’s Place Foundation arranges for the donation of airline miles, condominiums, boats, train tickets, car rentals, and medical equipment, whatever the desire of the child is to fulfill the dream trip. The Foundation will also provide a per diem for travel expenses, local transportation; meals, etc The foundation will profile each child that wins a dream trip on the website so check back in to read their stories!
- Extended Hospital Stay Fund
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 families with children that have at least 21-day prolonged stays in the Pediatric Intensive Care Unit (PICU) or young adults that have 21-day prolonged stays in intensive care units (ICU).
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 social worker to reach out to us by sending an email to us at the address listed below. We will respond with the application and request a letter of referral. 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.
Wishing you a beautiful and prosperous New Year!!!
John, Claire and Melissa!