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Amanda Jane Cooper and Carrie Manolakos bringing Oz to the Clairity Ball

June 1, 2019

Please join us for our First Annual Clairity Ball, an evening by the sea, celebrating the life and legacy of our late founder Claire Wineland. All proceeds will benefit families and individuals living with cystic fibrosis.

Photo Credit: Caitlin McNaney

Help us welcome two very special guests, Amanda Jane Cooper and Carrie Manolakos

We are thrilled to announce that Amanda Jane Cooper, who starred as Broadway’s 15th Anniversary Glinda in Wicked and Carrie Manolakos who starred as Elphaba in Wicked will be bringing Oz to the Clairity Ball by singing the meaningful song “For Good”. Prior to her 17-month run on Broadway in NYC, Amanda also toured as Glinda nationally from 2015-2017 and in 2011. You’ve seen her on some of your favorite TV shows like Glee, Jessie on Disney, CSI, Bones, Selfie and on NBC’s A Very Wicked Halloween this past October alongside Kristin Chenoweth and Idina Mendel as they all celebrated and sang for the 15th Anniversary special.

Carrie is a singer-songwriter and actress, she is perhaps best known for her stage work, on Broadway in Mamma Mia! as Sophie Sheridan, and on the second national tour of Wicked as Elphaba. She became an internet sensation after her cover of “Creep” by Radiohead went viral after it was picked up by Gawker, under the title “Eargasm“.

You can follow Carrie at @carriemanolakos and Amanda at @amandajanecoop

A very special THANK YOU to our dear friend Alice Issac for making this possible.

Held across from the beach at the Fairmont Miramar Hotel & Bungalows in Santa Monica, CA on Saturday, June 29th, this special evening will include passed hors d’oeuvres, cocktails and silent auction under a twinkle lit tree, celebrity guests, a sit down plated dinner, performances, awards and of course, lots of dancing. The evening will be anything but dull, in true Claire fashion.

We are thrilled to honor a few members of our extended family and community who have gone “above and beyond” in carrying Claire’s light and her legacy forward.

Justin Baldoni for his incredible work raising awareness for cystic fibrosis on a global level through his hugely successful directorial debut, Five Feet Apart.

Zappos for Good for their unending support of Claire both personally and professionally through Claire’s Place Playrooms and an upcoming project that we are so excited to share with all of you.

Vertex Pharmaceuticals, Inc. in acknowledgement of all of their scientific advances, as well as the wonderful programs and support they provide to our community on a daily basis.

Cole & Sanja Hatter of THRIVE: Make Money Matter for their continued support in sharing the message of Claire’s Place Foundation and for their incredible fundraising done since meeting Claire in 2016.

To find out more about our event and sponsorship opportunities, please visit the tab here on our site “Clairity Ball”

Press

My Last Days Follow Up Episode

May 3, 2019

In 2017, Claire had the incredible opportunity to share her story about living with cystic fibrosis on a show called My Last Days created by Soul Pancake and her long time friend Justin Baldoni which aired on The CW Network.

Creating the series with the other 5 individuals living with terminal illness led to long time, heart felt friendships and a sense of understanding between the group. Up until a few weeks before Claire’s passing, she was still in touch via group text with all of these very special human beings.

Watch here as Soul Pancake follows up with the 6 inspiring individuals spotlighted on season 2. Kendrick, Kat, Darth, Isabella and Jessica – we will always hold a special place in our hearts for you and please know that you remain in our thoughts and prayers.

Thank you Soul Pancake, Justin Baldoni, Wayfarer Entertainment and The CW for shining a light on these beautiful souls.

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

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