About

ONCE UPON A GENE - EPISODE 054 RARE. — A Brand with a Purpose: Theresa Thomas and Kristine Hoestermann Theresa Thomas and Kristine Hoestermann nurtured their own outlets of blogging and art and found each other online through the power of a hashtag. They fueled the spark of when they met into a glowing fire as they continue to pour their energy into RARE.— a brand with a purpose and also their podcast, Because We Are Strong. EPISODE HIGHLIGHTS How did you come to be part of the rare community? Theresa: I became a part of the rare disease community when my son was born with Beckwith-Wiedemann syndrome, an overgrowth disorder with an increased risk of developing cancer. One side of his body is bigger, he has a large tongue, his organs are bigger and he was almost 12 pounds when he was born. My son Owen is screened for cancer every three months along with abdominal ultrasounds and blood work. He's had one surgery on his tongue and has been hospitalized many times for respiratory issues. Otherwise, he's a fierce two year old in a five year old's body.  Kristine: I was 27 when the onset of my symptoms started. I knew something was wrong, some people didn't believe me, it was hard to get a clear diagnosis and it took a toll on my mental health. Currently, I have 42 running diagnoses. I got sicker and sicker and felt more and more isolated. It never occurred to me that I could wake up sick and never get better.  How did the two of you find one another and connect? Theresa: I started my blog March 2019 and I started searching for Beckwith Wiedemann families and other rare disease resources. I was searching using hashtags and came across Christine's Instagram, RARE. I reached out to her to ask if I could share her website and merchandise and we started talking everyday talking about awareness merchandise and soon realized we had the same mission.  Tell us about how RARE. was started and what it is. Kristine: Because I didn't yet have a name for my condition, I never felt like I could go into a support group because I didn't have a diagnosis and didn't know where I belonged. I felt alone and started creating things to help me express myself so that I felt seen.  Theresa: RARE. is an apparel brand geared towards raising awareness for rare disease, chronic illness and invisible struggles. It's a way of acknowledging that everyone is struggling with something. It's not always a rare disease or chronic illness that's invisible. It's more than clothes, it's about starting a conversation.  What changed for you personally after you connected? Theresa: I'm a woman of faith and I felt God gave me this gift to unwrap and run with. At the time, I wasn't sure what was going to happen with my career. I felt there was no way this was a fluke and I found comfort in knowing I could relate to someone else and I felt renewed. Kristine: I had a drive, but felt I wasn't going to do it alone. There were people helping out, but nothing felt right. When Theresa and I collided, I knew it was what we were suppose to do and we've been through so much in such a short period of time and we just figure it out each time. We balance each other well in business.  Tell us about your podcast, Because We Are Strong. Theresa: Because We Are Strong was initially a Facebook live session I did with Beckwith-Wiedemann families who I was connected with. I recently decided with Kristine to make these sessions into a podcast and make it a platform for everyone under RARE.  LINKS AND RESOURCES MENTIONED Because We Are Strong Podcast https://findyourrare.com/pages/downloadables RARE. Website  https://findyourrare.com/ Living Larger Blog https://largerthanbws.com/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7 Apple Podcasts https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/