An inspiring story, a much-needed word of encouragement, or a well-placed bit of advice can make all the difference in a difficult journey. And sometimes, all it takes is knowing that you’re not alone. Hear from hosts Andi Callaway & Jeremy Bedig on the inspiration behind it all, the ups and downs of getting started and where they plan to go from here! Andi is the Founder and the President of the Nephrotic Syndrome Foundation and has a teenage son diagnosed with Minimal Change Disease (MCD) at age 6. Jeremy is a two time kidney transplant recipient and professional soccer coach initially diagnosed with Focal Segmental Glomerulosclerosis (FSGS) at age 14.
“These are just stories we're sharing, but you know, they all could trigger
a thought that maybe a parent might then be able to go follow up on and
ask a provider about...”—Andi Callaway
In this episode of The Nephrotic Syndrome Foundation podcast, we give you
a glimpse into our vision and the “Why” behind our efforts. We’re “setting the
stage” for the many future stories you’ll hear.
We believe there are many warriors in the nephrotic syndrome world—from
patients, to parents, siblings, and providers—each with wisdom to share.
Show Notes
(3:25) Andi and Jeremy sharing what it feels like to share their own stories...
(6:53) “I think that's one of our big goals of the podcast, is just to really
bring people together and show that there are so many things that we've
all had to go through.” Finding unity in shared experiences...
(11:27) Reflecting back and being in the trenches—both contribute value.
(15:04) “When you're having a great month, you don't need to tap into this.
Go enjoy your month.” A podcast is a resource that can meet you where
you’re at.
(18:43) Cynthia’s inspiring journey...
(21:34) Wilson’s and Jeremy’s experiences of not wanting one more
procedure.
(25:53) A shoutout to Dr. Orloff and Jon Rankin...
(29:01) The Just One Challenge and how it fits into the nephrotic community...
(32:27) “When I say that they are warriors, I believe it to the core of my
being.”
(35:22) What’s the vision for the podcast six months and two years from now?
(39:37) Getting something you believe in off the ground—chatting about the
challenges of starting the podcast.
(43:10) Flashbacks, PTSD, and self-care...
(47:22) All the types of guests...
(59:55) Ways to get involved...