Transplant Advocacy & Support

End-stage lung disease. The words none of us ever want to hear but many of us will in our lifetimes. Lung transplants are the single-most difficult decision Cystic Fibrosis patients will ever have to make for themselves. We aim to help make significant changes.

Opt Out vs. Opt In

Right now, when you register for a driver’s license, you are presented with a question…

“Would you like to opt in as an organ donor?”

Often the print is so small its overlooked. So many people do not even read the application in its entirety to get to that point in it. That needs to change.

In other countries, all citizens are “presumed donors” and if for any reason, religious or otherwise, you wish to opt out, you can do so. The applications highlight those sections and are prominently put at the top. So why can’t America change its process to have all our citizens be “presumed donors”? It’s a fair question.

Appreciate Every Breath Foundation™ will advocate for changes to our organ registration system that will change the landscape of transplant access to our patients.

Transplant Access Equality

As it stands, United Network for Organ Sharing (UNOS) has divided our country into 11 regions, creating geographic disparities in access to organs for transplant. If a patient needing organs in one region is sicker than the sickest patient in another region, they do not get the next available organ. Organs are first given to the sickest person in each region. This has caused thousands of people to die unnecessarily. This absolutely NEEDS TO and MUST change.

Organizations like the National Coalition for Transplant Equity have taken up the charge to try to get Congress to pass life-saving changes to the Organ Procurement and Transplantation Network (OPTN) at the federal level. Appreciate Every Breath Foundation™ aims to help stabilize the transplantation methodology so that patients with the highest need are prioritized at a national level, not just regionally. We will partner with established organizations to help raise awareness of the intricate details of organ transplants.

Tax-Free Transplant Support

Most people listed for transplants turn to sites like GoFundMe and PayPal for raising the thousands of dollars that it takes to support themselves post-transplant actively. Often patients are asked to relocate to be within 15-20 miles of their transplant centers, which can be ridiculously expensive when you are already drowning in medical debt.

Appreciate Every Breath Foundation™ fundraises as a non-profit organization, with a 501(c3) IRS designation, which then supports the patients completely tax-free. We do this through providing every grant recipient that is on an active list or even those that are post-transplant, at any age, a fundraising page within our site where all people can donate to. We also partner with Chase® and Bank of America® in order to manage our fund distribution for transplant-related expenses. Qualified expenses include but are not limited to: relocation, rental housing, medications, doctor visits, lab work, medical imaging, medical equipment, food and groceries, etc.

Also, we offer our Event Management services to help our patients set up their donation activities to help raise funds for their AEB Transplant Support accounts. So the entire force of our talented team for fundraising will be at the family’s disposal.

If there is anyone that is interested in getting set up with an AEB Transplant Support account, please click HERE to fill out a form where we can start that process.