Works to Improve Quality of Life - Standing Up to POTS

Interested in starting your own journey in health and wellness but unsure what to expect? Then read up on our interview with Dr. Cathy Pederson, President of Standing Up to POTS, located in Springfield, OH, USA.

What's your organization, and who are your members?

Standing Up to POTS is a 501(c)(3) non-profit organization that seeks to improve the quality of life for people with postural orthostatic tachycardia syndrome (POTS) through research, advocacy, and support. We serve people with POTS from 192 countries via our website, social media presence, and podcast called The POTScast.

Tell us about yourself

I am a Professor of Biology at Wittenberg University, and my Ph.D. is in Physiology and Neurobiology. I teach courses aimed at students who want to attend medical, dental, physician assistant, etc., graduate schools. Once I had tenure, I adopted two beautiful infants from China, and we were a happy family. I taught courses about the autonomic nervous system annually but never thought about what happens when those automatic functions fail as they do in POTS.

When my oldest daughter, Lily, turned 10, she got sick. We were back and forth to the doctor, and finally, she was diagnosed with mononucleosis (mono) which is unusual in someone so young. The problem was that she never recovered from that infection. It took us 9 specialists before she was finally diagnosed with postural orthostatic tachycardia syndrome (POTS). Naively, I thought the difficult part was over - we now had a diagnosis. Little did I know that there are no FDA-approved medications for this disorder and that treatment is very much hit-and-miss. More symptoms. More doctors. More children's hospitals. No real help.

There were two main reasons that I started Standing Up to POTS in 2014. First, Lily wrote an essay about what it feels like to have POTS as part of a contest, and my younger daughter, Kate, illustrated it to make a book. They sold their book and raised a couple of thousand dollars for POTS research. Second, my frustration was growing as I struggled to help my daughter recover her health as she moved into her teen years. I decided that if I couldn't help her, maybe I could help push an entire chronic illness community forward. That's how Standing Up to POTS was born.

What's your biggest accomplishment as an organization?

Just over a year ago, we launched a podcast called The POTScast. This is nothing else like that in the POTS community. We go deep into all things POTS: the basics, the research findings, interviews with top doctors, and other practitioners. We bring in experts from the fields of nutrition, physical therapy, occupational therapy, psychology, service dog training, job hunting with disabilities… anything we can think of to help POTS patients. We also have episodes called The POTS Diaries, where we interview patients and their loved ones about their experiences and any wisdom they have to share with the community. We try to keep it light and fun but also full of the absolute best and most practical information to help patients.

What's one of the hardest things that come with being an organization?

There's a lot of responsibility. I have a fabulous Board of Directors who help with a lot of our operations, but every decision is ultimately run past me before implementation.

What are the top tips you'd give to anyone looking to start, run and grow an organization today?

When I started Standing Up to POTS, I decided that my motto would be "Say yes to opportunities." I think that is excellent advice that I've tried to live by. Sometimes opportunities are scary - like being interviewed on NPR or for TV news spots - but those also allow growth both personally and for your brand. Second, grow at the pace that feels right for you. Be sure that you are not spread so thin that balls are dropping. Finally, follow your passion. I think that's the only way to be successful long-term is to work on something that really excites you. All businesses have their not-so-fun side, but if you believe in your mission and love the community you serve, that's what it takes to renew that commitment daily.

Where can people find you and your group?

Website: https://www.standinguptopots.org/
Facebook: https://www.facebook.com/standinguptopots
Instagram: https://www.instagram.com/standinguptopots/
Twitter: https://twitter.com/POTSActivist
LinkedIn: https://www.linkedin.com/company/standing-up-to-pots/

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