Today is October 1, 2022 and the start of PCD Awareness month. To me this month is all about raising awareness of PCD and raising money for the PCD Foundation. I’ve been asked why I made Running On Air (ROA) a non-profit and asked questions about if I was still supporting the PCD Foundation, since I do fundraising for ROA. I’m finally answering that question below which includes an explanation of the evolution of ROA.
Around the beginning of October 2014 I was sharing on Facebook that I was “running” the Army Ten Miler in DC on October 12th and asking for donations for the PCD Foundation. A friend of mine who is in public relations reached out and said he could send out press releases to the local media and see if anyone was interested in covering my story. He felt someone wearing supplemental oxygen and doing a local 10 mile race was news worthy. We said we’d be at a lake in Columbia, MD on October 9th at a certain time. One Baltimore TV station came and did a wonderful piece.
It occurred to me after seeing this air that there was an opportunity to raise awareness of PCD. I decided to use a catchy name (thus Running On Air) that would help to raise awareness. Three days later I had come up with Running On Air, created a website and made my first ROA shirt with a sharpie. My public relations friend said news organizations aren’t really interested in fundraisers unless they are sponsoring it or there is some kind of twist to the story. I thought doing races as ROA would help to raise awareness of PCD and help the PCD Foundation.
There was another piece too though. In June 2013 my sister, who also has PCD, and I were prescribed supplemental oxygen. My sister needed oxygen 24/7 and I needed it for exertion – essentially when running.
My sister is a nurse practitioner and works part-time at the University of Maryland’s health center. I received a call from her in tears. She explained her supply company had just delivered her oxygen. A home unit and a few tanks. She told the driver that there weren’t enough tanks to get her through the week at work and his response was “People on supplemental oxygen don’t work”. When my sister called the company up to ask for more tanks, they said they preferred to only make deliveries once a week.
When I received a call from the company my doctor had sent my oxygen prescription to, which was not the same as my sister’s, I asked them what I would be receiving. I was told a home unit and a few tanks. I told them this wouldn’t meet my needs because I needed the oxygen for my workouts, and I wanted a portable oxygen concentrator. They said they didn’t carry those. I told them I would reach back out to my doctor to find a company that could supply one and they said they worked with another company and would probably be able to get me one. They said they’d get back to me. They never did.
Because of the issues my sister and I had getting supplemental oxygen, and because it was wearing the oxygen and racing that made PCD newsworthy, I wanted ROA to advocate and raise awareness of supplemental oxygen too.
Of course, PCD is not the only disease that uses supplemental oxygen. The more people on supplemental oxygen I met the more I learned about the difficulties they had getting the type of equipment they needed to live their normal lives. I decided that ROA needed to be more inclusive of all lung diseases. My reaction to seeing COPD specific oxygen or Pulmonary Fibrosis specific oxygen information made me feel this information wasn’t for me. Plus it’s hard to find unless your look for those disease groups. I wanted ROA’s oxygen information to be inclusive of all who need supplemental oxygen. There may be some specific needs based on disease group but for the most part the equipment and companies that supply it are universal to all of us. And those companies certainly treat us all the same.
I started working with different organizations on various areas that overlapped with PCD. I advocated with the FDA for 2 inhaled Cipro drugs (neither were approved) to treat pseudomonas in bronchiectasis. I created rare disease facts to bring attention to Rare Disease Day. I spoke at the National Institutes of Health’s (NIH) Rare Disease Day event.
The connections I have made have helped to keep PCD in certain conversations that the Foundation just can’t spare resources for at this time (like supplemental oxygen). I’m involved with the oxygen group through the American Thoracic Society, I’ve worked with the COPD Foundation and been part of their Hill Days in which we go to DC and speak to our representatives about oxygen issues.
This has all been to help spread awareness of PCD and the PCD Foundation. Becoming a non-profit does not change that. I’m not looking to take anything away from the PCD Foundation but work with it to help enrich the lives of those of us with PCD.
Michele Manion and Lynn Ehrne, the co-founders of the PCD Foundation, have worked tirelessly for over 20 years to make the Foundation what it is today. Some people have asked why the PCD Foundation can’t be more like the CF Foundation and offer more services for patients. The answer is resources, both people and money.
Being a non-profit has it’s advantages (and disadvantages) one of which is being able to accept tax deductible donations and applying for grants.
Running On Air is not in competition with the PCD Foundation. We collaborate with them. Becoming a non-profit helps us to do this even more. We aren’t looking to take donations away from the Foundation, but rather to help them fundraise. That is why, despite being an advocacy organization for PCD, Running On Air does not fundraise for itself in October. Our efforts are in support of the PCD Foundation first and foremost, especially in October.