Our Mission Statement
To provide support to Cystic Fibrosis patients and their families in three distinct ways; mental health support, career development assistance, and transplant advocacy and financial support.
“Living a life we’re proud of, that’s something we can control.”– Claire Wineland
In one word, our inspiration comes from YOU. The CF Patients we deal with on a daily basis are the seed of the inspiration that drives the work we do. We cannot change the world without taking that first step. And our steps are motivated by the thousands of people that are affected by Cystic Fibrosis, their loved ones, family, and friends.
For us patients, there is so many things in our lives that we cannot control. Whether that’s our lung function, the state of our health, the ups and downs that come with it, or even the mental state that often bounces up and down for us. But we can control many aspects of our lives, like doing our treatments as prescribed, seeing our doctors and nurses on schedule, taking our medication as needed, eating well, exercising, and doing our best to stay as healthy as we can be. But we can also control what we do with this life, and the people we touch with it.
We do believe that Cystic Fibrosis as a disease was always deemed a Pediatric illness because for so long, our patients wouldn’t live to see adulthood. Thankfully, that has changed as medical advances have pushed our life expectancy into the early 40’s. Children with CF can often look to a future where they are adults and living on their own and getting married and becoming parents, etc. etc.
But with “adulting” comes the very real reality that in order to care for ourselves properly, we may not be able to take on full time jobs or jobs that require us to be confined to an office all day. Because most of us have treatments that require an oscillating vest machine and nebulizers and in some cases IV medications that require a sterile field and needles. These aren’t easy things to do in an office setting.
Corporate America, with all its own advances in technology, should be much more open to flexible scheduling that allows us to work remotely or work from home on certain days or work from the hospital when we’re admitted. Its not an obscurity to think that we cannot do most jobs through a Virtual Private Network (VPN) connection. Of course some jobs just do not work virtually, like nursing or construction. But that requires us as patients to be smart about the career paths we take.
In all there is a lot of work to be done to convince corporations that if they give us some flexibility, they gain loyal, appreciative workers that will do amazing work and bring value to their company’s bottom line.
Claire’s Place Foundation
The specific purpose of Claire’s Place Foundation is to provide heart felt help to children and young adults diagnosed with Cystic Fibrosis, as well as their families, for the purpose of improving their quality of life. We hope to accomplish this by heightening awareness and providing education, skills, financial and emotional support.
How It All Works
Grants from Appreciate Every Breath Foundation™ are given to patients, loved ones, and family members dealing with Cystic Fibrosis for mental health care that will pay for the co-payments or total fees to see counselors, therapists, psychologists, and more. Often these co-payments can be either too high or a patient’s particular health insurance doesn’t cover behavioral health.
Grants are paid for by corporations and private donations to Appreciate Every Breath Foundation™, thus they are limited to special needs cases and by the amount we have on hand to give. As such, we must review each applicant’s individual applications to ensure we can help.
For our endeavor to change the perspective of corporate America to not only provide flexible scheduling for our patients, but ensure they go beyond that to help and assist them, it takes education. Education that can only be given through public speaking engagements, personal meetings with Human Resource representatives, and networking with CEOs, and other important policy makers for the companies that are willing to hear us out. That means it takes time, travel, and hospitality expenses that also comes out of our budget.
Our Latest Posts
Preparing for our First Fundraiser
Movie at the Park Our first fundraiser will be a movie at the park showing the feature film, “Five Feet Apart” directed by Justin Baldoni. We will preface the show by adding in a Food Truck Rodeo with all the tastes and goodness of Phoenix, AZ. We have some of…
It’s Here! Claire the Movie
We could not be happier to bring to you “Claire” the movie. We’re so honored, touched, and incredibly proud to say that this little girl has become the force behind what we want to do with this foundation. A personal and sincere thank you to all the beautiful people that…
Officially Applied for Our 501(c)(3) Status
Yesterday, we officially applied for our 501(c)(3) status that gives us the ability to work and help our people in a way that we could not do before. With this IRS designation, all our grant recipients will never have to worry about an income tax excised onto them unjustly for…
TLP Founder Creates New Non-Profit Organization for Cystic Fibrosis
As many of you know, our founder Maria was born with Cystic Fibrosis. At the age of 5 her family was hit with a disastrous event in where she lost both her brothers, Junior was 21 and Rey was 12 at the time, to a fatal car accident in Venezuela. …