Our 10th Anniversary
Since it is our tenth anniversary and is our third year as a 501(c)(3), it seems like the
perfect time to celebrate with an Impact Report.
I started Running On Air in 2014 because I wanted to change attitudes around
supplemental oxygen. It seemed like all supplemental oxygen users were lumped together, with no regard for their individual needs or lifestyle. We are given equipment that doesn’t meet our needs, and many people on supplemental oxygen feel embarrassed and defeated.
However, supplemental oxygen is not the only area where vastly different patient
populations are grouped into one. Non-cystic fibrosis bronchiectasis saw multiple drugs
fail to achieve Food and Drug Administration (FDA) approval in the 2010s, prompting us
to attend FDA hearings and advocate for a better understanding of this complex and mixed grouping of patients.
As you’ll see from this Impact Report, we’ve been fairly busy over the past ten years, and what an exciting year this tenth anniversary is! The Supplemental Oxygen Access Reform (SOAR) Act (S. 3821 and H.R. 7829) was introduced. Running On Air is part of a coalition of supporters for this bill that is working together to share patient voices and encourage people to contact their members of Congress. (You can learn more about the bill and how you can help by clicking here or by scanning the QR code in Links section of this report.)
There’s still plenty of work to do though, as there’s lots of misleading and confusing
information in the supplemental oxygen world. Along with publishing our annual
Portable Oxygen Concentrator (POC) Guide and comparison chart, we continue to attend conferences and share educational materials to help everyone understand these devices better. We will continue to reach out to the FDA and the Federal Trade Commission (FTC) to ensure POCs accurately and clearly report their capabilities, and to either remove or explicitly label “nonconcentrators.
With so many bronchiectasis drugs showing great promise, we look forward to keeping patients updated on new trial opportunities, as well as what medications have received
FDA approval.
When I started Running On Air I had the vision that one day supplemental oxygen patients could go to one of our oxygen “stores.” They could learn about the various types of oxygen and find what fit their needs, taking into consideration their lifestyle and
their oxygen requirements. We are closer to that vision than ever before and to accomplishing so much more in the coming years.
