Un-fog with Our Blog
With the New Year approaching, we are expanding our blog! Stay-tuned on the first Friday of each month for a new post on patient stories!
Hi everyone! Welcome to the first TDP Patient Story blog. For our first case study, we will be summarizing the journey of a male patient living in Denmark, age 52. He is battling multiple forms of dysautonomia including: autonomic dysfunction, orthostatic hypotension, and hereditary neuropathy with liability to pressure palsies also known as HNPP. While…
The Story Behind The POTScast
#MugsUp
I have always had 2 specific dreams/goals in life.
1. To work for an organization that I truly and whole-heartedly believe in (check).
2. To be a journalist/reporter (kinda check?).
I consider myself to have accomplished my goals 100%, and that is something that not a lot of people can say. I LOVE my job - all of the amazing people I work with, the patients I work for, and the creative freedom I am blessed to have each and every day. I get to use my job to raise awareness and education about dysautonomia to not only physicians and patients, but also to the community! One thing that all of my family and friends should know about me by now, is that I have always loved the community. There is power within each and every community and once that community is educated and has knowledge...well you know the rest.. KNOWLEDGE IS POWER. When reflecting back on my life, I realize that bringing people together, no matter what the occasion is, has always been my forté. I have always loved being surrounded by people, making them feel loved and welcome, and doing things for the common good of humanity. This is what my job feels like every day.
So, you're probably wondering, ok so what makes you a journalist or a reporter? Well, The POTScast of course!! Each week, I am creating questions for our special guests, leading interviews, and broadcasting our work to the world! I have always been on the other side of interviews - getting asked questions like "what do you know about our company?" or "what makes you a good fit for this position?". I get to ask the questions now!
If you haven't listened, I encourage you to go look for The POTScast on iTunes, SoundCloud, or Google Play Music, OR just click on The POTScast tab right here on the website and go from there! (like my little plug right there?)
Where did The POTScast come from, you ask? To be completely honest, Rylee (my co-host) and I were wanting to start a podcast of our own, but we quickly realized that starting a podcast and talking about day-to-day topics is actually really difficult. Well, it's easy to do, but difficult to gain an audience. I kind of took the reigns and thought, pretty quickly I may add, "we need to create a voice for Dysautonomia/POTS patients to reach our community at-large". Rylee quickly agreed, and I went in to our President, Nate Freeman, to propose the idea. I was really nervous. I never took an idea and ran with it the way I did with The POTScast, and I was brand new to The Dysautonomia Project. Our meeting was really productive, Nate agreed, but I HAD to make sure I followed through! I literally could feel the weight of all Dysautonomia patients around the world on my shoulders! (side note - if you don't know me, I tend to really invest myself and stress myself out more than I have to, but that's being human right?) For days, I researched the best podcast equipment, POTS facts, podcast do's and don't's, and so much more!
We bought all of the equipment, we were ready to go, but wait - no special guest..
Fast forward to the American Autonomic Society Symposium in Clearwater Beach, FL. Our exhibitor/sponsor booth was right next to NormaLyte's. I had been watching them throughout the conference and they seemed so easy to talk to, so nice. Funny enough, the fire alarm went off the day before the final day of the conference. Somehow, I became separated from all of the board members that attended the conference with me, and I found myself outside all alone. To my surprise, I was standing right next to Sam Lee, Founder and CEO of NormaLyte. I figured, who knows how long we'll be out here and I have his full attention, why not ask him to be our first guest? So, I mustered up the courage and asked him if he wanted to be a guest on The POTScast! He was super excited about it and of course said yes! Episode 1 of The POTScast was set!
From then on, we have gone on to interview other special guests such as Dr. Glen Cook, Natalie Van Waning - Pediatric ARNP, Brian Dery - Founder of Banana Bag Oral Solution, and a few patients such as: Former Miss Tampa - Morgan Boykin and Emily Anne. We even spoke with former board member and champion for all dysautonomia/POTS patients, Christina Tournant's mom - Tava Wilson.
The POTScast is just getting started, and we have so much growing to do as podcaster's (and as journalist's), but we are so appreciative of all of you that take the time to listen and actively participate in posting your #MugsUp photos. Thank you all so much for continuing to share information about dysautonomia/POTS with all of your friends and family! Our vision truly is coming to fruition. I encourage each and every one of you to take your ideas and run with them. You never know what they will turn into. It's so easy to be afraid of failure AND success! Don't be!
MUGS UP,
Jillian