Families we have assisted

Meet Aria – Extended Hospital Stay Grant Recipient

April 25, 2019

Claire’s vision and mission to help people living the day to day life with cystic fibrosis is being realized in large and small ways across the country. This mother’s responses to our post grant follow up questions tells her family’s story and what the support meant to them. We are so very grateful for your support as we carry Claire’s light forward through these grants.

1. How did you find out about Claire’s Place Foundation?  

I heard about Claire’s Place Foundation through our wonderful Social Worker at CONFIDENTIAL. However, I was aware of the foundation from my CF mom group where I learned more about Claire herself, may she rest in peace. 

2. How, specifically, has Claire’s Place Foundation helped you and your family?

Claire’s Place Foundation has helped my family get through a tough time, financially but honestly beyond that.  Receiving help emotionally lifted a huge amount of pressure off of our plate. Things were really piling up already, being admitted before Christmas, we didn’t know what to expect.  We have 2 other kids, and we were already keeping things to a minimum and looking forward to just spending time, especially for my youngest daughter this was her first Christmas.  We wanted to give the kids a smile to enjoy the holidays but be realistic that money was just not there.  They seem to understand, and it broke my heart for them to say all they wanted was their baby sister home.  Emotionally I just didn’t know how to get through each day, without getting angry or frustrated. We had no idea how serious things were going to get. Rent will be overdue and fees; but it wasn’t just one, with the weather being so cold our light and gas bills were already pushing to disconnect as we couldn’t keep up with the total account, trying to keep up with the minimum due payments, they wouldn’t take anything at that point unless it was paid in full.  We still had day care costs because of course we needed to hold the spot upon her release, car insurance due, car payments.  It was just all coming down.  At the same time, I tried to focus on the doctors giving me information on all the new tests, procedures, treatments that our little one was getting. While working a full time job, leaving work to run home pick up laundry make sure my other children had things they needed, switch out so the other can get to work; made me feel like the ball in a pinball machine. When all I wanted to do was sit and hold my daughter and let her feel that she was going to be ok, I couldn’t.  Of course when we didn’t think things could get worse, the disconnection notices started to come, one of us losing a job at the same time, and maxing out using credit cards to keep afloat. Providing our family with this financial support allowed us to be able to just take a sigh of relief, the words honestly can’t describe.  The help we received from Claire’s Place Foundation allowed us to not only pay bills and balance out the rest, but give us a stepping stone to get ahead.  It left room for us to focus on family and being present with each other, especially for our other two girls that don’t quite understand or worry more than they should.

3. Can you please provide a few sentences, in your own words, describing your situation and your feelings about receiving this grant that we can use on our website and in our newsletter? 

Claire’s Place Foundation provided my family a true sense of relief.  Feeling the weight of the world while worrying about your child who is sick at the same time leaves you numb. We haven’t been financially stretched this thin in a long time; where I didn’t see a positive outcome nearby.  We were already behind and having to miss work some days, not having enough paid time off from work to cover myself, I had to get back to work because I knew bills were coming.  I was truly worried, having to ask myself what we can do. Where can we turn? Will this work out? Having to think about all the possibilities for my youngest daughter with CF and the other 4 people I am responsible for put me in a stage of panic. We don’t have many people we can rely on to help watch our other children so we did the best we could in changing schedules, we literally would be like a revolving door.  I would try to pick up my other kids from school a few days a week and have a few minutes to catch up while racing back to the hospital to tag team out and get back to my daughter.  The exceptional work that Claire’s Place Foundation does leaves me speechless.  They allowed us to take a moment and get back to spending time with each other have some comfort and we can be put ahead again.  I honestly felt like I was drowning and receiving this generous gift pulled us all out.  The weight that was lifted off our shoulders honestly gave us hope that things would be alright.   

Words cannot truly express how grateful we are.  We are honored and humbled to have been helped in a way that allowed us to get back on our feet plus a step ahead and focus on continuing to fight until CF stands for Cure Found!  Thank you a million times over.

Blog & Events, Celebrity Friends, Press

Hear how Claire Wineland influenced actor Haley Lu Richardson

March 14, 2019

Haley Lu Richardson deeply committed to ‘Five Feet Apart’

By Rick Bentley, Tribune News Service

Haley Lu Richardson knows that with a casual glance “Five Feet Apart” looks like another angst-filled teen romance. It’s the story of two star-crossed teens who fall in love in a hospital. The angst comes from how they must stay 6 feet apart because both are suffering with cystic fibrosis (CF), which is extremely contagious between CF patients.

Cystic fibrosis is a life-threatening genetic disease that makes the body produce thick, sticky mucus in the lungs, pancreas and other organs. Approximately 30,000 people in the United States have CF. The film’s title comes from how Richardson’s character, Stella Grant, decides to defy CF rules and move a foot closer to Will Newman (Cole Sprouse), the young man who has captured her heart.

© Sthanlee B. Mirador/Sipa USA/TNS Haley Lu Richardson arrives at the “Five Feet Apart” Los Angeles Premiere held at the Fox Bruin Theatre in Westwood, CA on Thursday, March 7, 2019.

Richardson wants audiences of all ages to see “Five Feet Apart” as a universal story about unrequited love, the frailty of life and the imperative need for human conduct.
“One of the major reasons I like acting is so universally (is) just anyone can watch a movie and feel something. That means a lot to me,” Richardson says.
Richardson’s research to play the role included meeting with Claire Wineland, a CF patient whose nonprofit, Claire’s Place Foundation, supported and organized people with terminal and chronic illnesses. Before she died at the age of 21, Wineland was in the documentary series “My Last Days,” produced by “Jane the Virgin” star Justin Baldoni.
Baldoni, producer and director of “Five Feet Apart,” helped Richardson make contact with Wineland.

“She was so open and really wanted this film to do its job of representing her life and the life or real people with CF,” Richardson says. “She was such a wise human being.
“I did a lot of research and we had a CF nurse on set every day to get the medical stuff as accurate as possible. But, the most important thing was getting to spend time with Claire. She really taught me the emotional effect of CF on the child and the family.”

Richardson took all that knowledge and mixed it with her own thoughts of what Stella would be feeling. She concluded that Stella was dealing with a lot of guilt and pressure because of the dark cloud that hung over her and her parents from the day she was born.

The key to the film is Stella defying the cardinal rule of falling for Will. The connection is important to both, as Stella has lived a very regimented life through her battle with CF, while Will has resigned to the reality his days are extremely numbered and lives each day as if it could be his last.

Playing out the love story was easy for Richardson because of working with Sprouse (“Riverdale”).
“I was surprised and excited by the fact that Cole is a real artist and takes everything he does – whether it be acting or his photography – very seriously and he cares a lot,” Richardson says. “I also care to a fault about playing a character and so we both cared the same amount.
“When you have two people who are genuinely invested in doing the best they can do and bringing justice to these characters, then we could feed off each other and connect in these big moments.”

Part of Richardson’s focus when playing a role comes from her early days as a leading dancer with the Phoenix-based Cannedy Dance Company from 2001-2011. Her days as a dancer drove home the importance of training, rehearsal, hard work, determination and organization. These are all traits she brought to the acting world in projects such as “The Bronze,” “Ravenswood,” “The Chaperone,” “Recovery Road” and “Split.”
Stella has a master list of things she wants to do in her life, but Richardson doesn’t have such a document. She does have one thing she knows she would like to do and that is to star in a movie where dance isn’t just something the characters do. She wants dance to be used to tell the story. That’s a big hope for Richardson, but she’s never backed down from any test.

Blog & Events, Celebrity Friends

Andy Grammer Gives Back to Claire’s Place Foundation

March 5, 2019

Andy Grammer has released “Don’t Give Up On Me,” his new song from the upcoming film Five Feet Apart.

The song was first heard in the trailer for the movie, which stars Cole Sprouse and Haley Lu Richardson as two teenagers with cystic fibrosis who fall in love, despite being advised to keep a safe distance from each other for the sake of their health. The film is directed by Justin Baldoni, an old pal of Andy’s.

“’Don’t Give Up On Me,’ although a very simple concept – is truly a very powerful one,” Andy says in a statement. “I have had many moments in my life where I wouldn’t give up on someone else, where I believed in them when they didn’t believe in themselves.”

He adds, “Hell I’ve had SUPER intense moments where I wouldn’t give up on myself. But the most powerful memories from my personal vantage point are the ones when someone wouldn’t give up on me.”

A portion of the proceeds from the song will go to Claire’s Place Foundation, a non-profit providing support for children and families affected by cystic fibrosis. The foundation was named after Claire Wineland, who inspired Baldoni to make the film.

Five Feet Apart hits theaters March 15.

PURCHASE/DOWNLOAD/SHARE:  https://andygrammer.ffm.to/dontgiveuponme

 

Families we have assisted

Meet Amy ~ Extended Hospital Stay Grant Recipient

March 4, 2019

What a wonderful turn of events for us here at Claire’s Place Foundation.   As painful as it was to lose our dear founder, Claire Wineland, we find joy in helping others who are struggling with cystic fibrosis and know that Claire would be thrilled that the foundation she worked so hard to start will live on in her honor.

This is Amy, she is a young woman living with cystic fibrosis and a recent double lung transplant recipient.  For her, being a young adult and financially responsible for herself, work and income were a huge issue due to her health decline.  She recently left a full time position and had gained part time employment to accommodate her intense CF regimen and medical appointments but this job did not include sick leave or vacation time so her income suffered greatly.

In May, she was admitted to the hospital with a severe infection and placed in a medically induced coma to buy some time for the doctors to see if they could find her a lung donor to save her life.  She waited in that state for a month, her family and medical team hoping and praying to find a match in time.  Luckily, on Sunday June 17th, 2018 a match was found and Amy was given a double lung transplant, a new lease on life. The next 2 months were spent in patient and she was recently allowed to go home and begin the slow and steady recovery process.

We are happy to let you all know that through our Extended Hospital Stay Grant Program we have been able to help with her living expenses for the next 2 months so she can rest and recuperate post transplant.

Amy writes “Claire’s Place Foundation has been uniquely accommodating and understanding regarding the enormous financial strains having Cystic Fibrosis places on individuals and  their support networks. In my experience it has proven willing to provide crucial financial support for expenses like rent that can be threatened by multiple, extended hospital stays (in my case it was over eighty-days in a row …). I am extremely grateful to Claire’s Place Foundation for providing critical support during a very uncertain time in my life – the need for a double lung transplant in the summer of 2018 was not at all something I anticipated, and threw my plans up in the air completely. Claire’s Place was so easy to work with and genuine in their willingness to help, it made a challenging, unpredictable situation easier. I’m beyond grateful for the chance to still be here, and will hopefully pay forward the kindness and support I’ve received from individuals and groups like CPF. ”

This grant is only possible because of our incredible donors and your support of people living with cystic fibrosis.  We are eternally grateful for all of you and are sending our prayers and good wishes to Amy as she begins this next chapter in her young life.

 

 

Blog & Events

7 Years Strong!

March 3, 2019

 

Founder, Claire Wineland 4.10.97 – 9.2.2018

The end of 2018 marks 7 years serving families, children and young adults living with cystic fibrosis. We are so very proud of our late founder Claire Wineland and the success of her foundation.

Claire founded Claire’s Place Foundation in 2011 following a life threatening medical crisis. She was inspired by the amount of support that our family received during her extended hospital stay and was determined to provide that support for others who may not have it otherwise. We are excited to celebrate 7 wonderful years and to continue her mission in her name.

In honor of this milestone, please consider making a year end donation in any increment of 7 or any amount including 7 as a way to acknowledge that her vision and her impact lives on 💥💫🤸‍♀️🎖🙌🦋🙏

Wishing you all a wonderful 2019 full of purpose!

Become the person that your younger self would have been inspired by” ~ Claire Wineland