We have three established goals for our foundation that will provide significant assistance to our members, their families, and our cause as a whole. Starting first with mental health support, we understand how incredibly hard it is to deal with a terminal, chronic illness. Offering grants for our CF’ers and their immediate families to help pay the co-pays or under-insured/not covered therapy is a first step for us to be able to help others.
From there, we also understand that providing for yourself as an adult with Cystic Fibrosis is an important part of stabilizing your mental health too. But companies are still hesitant to make much-needed changes to accommodate people with chronic illnesses, not just CF. So we must start to change that mindset at the corporate level through education, training, and tools. Knowing how to facilitate work for and why it is important is a great start to getting companies to accept more of our people.
Finally, we aim to assist national organizations that aim to change the way we are managing transplant priority across our nation and aligning with the “presumed donor” or “presumed consent” standard that other countries of the world have been adopting for decades now. These are important changes that MUST be made to ensure organs are available for all that need it, again not just a CF problem, but a world problem.
MENTAL HEALTH SUPPORT
Appreciate Every Breath, as a foundation that supports our patients and their families, seeks to enlist professional counselors to donate their services to our grant recipients. Online and in-person therapy sessions will be paid for on behalf of those that battle depression, bi-polar depression, anxiety, and any of the multitude of mental health disorders that often accompany patients of terminal chronic illnesses such as Cystic Fibrosis.
CORPORATE OPPORTUNITIES
We focus on educating companies and other places of employment of how to best serve people with disabilities, in general, but focusing on the needs of those with Cystic Fibrosis. Patients often have to ensure they are able to do treatments throughout the day; which can include inhaled medications through a nebulizer, airway clearance techniques such as the use of an oscillating vest, and/or IV antibiotics and other medication through a central line device known as a port-a-cath. This makes going into an office quite difficult and in certain instances impossible. We need to educate corporations on how to enable and empower our patients to provide value and meaningful work to their lines of business in a way that adopts the advanced use of technologies that are available today.
TRANSPLANT ADVOCACY & SUPPORT
Where thousands of Cystic Fibrosis patients end up is at end-stage lung failure, which pushes them into the world of organ transplantation. While there has been a massive improvement in the number of available organ donors across the globe, there is still more to be done.
Our foundation will focus on advocating for change to our country’s laws, matching those of so many others that have “presumed donor” laws.