Because We Are Strong - podcast cover

Because We Are Strong

Kristine Hoestermannwww.findyourrare.com
Welcome to the because we are a strong podcast. A podcast inspired by stories of struggle and strength. A place where you can feel safe enough to share every part of your rare story. The good, the bad, the happy, and anything in between. Many times those in the rare disease community feel isolated from the rest of the world. Rare disease comes with its own set of unique challenges, ones that are hard for the outside world to understand. Through our stories, we can bridge the gap between a lack of knowledge and understanding. Your story has the potential to touch and reach those who can relate and who otherwise feel alone. Together through our struggles, we can show our strength.
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Episodes

Chronically Chatty: Em, Kate & Two Being Healthy

SURPRISE. We are back again this week with a new episode of Because We Are Strong and this is definitely not one to miss. . We sat down with two amazing women who happen to not only share the same rare conditions, apartment, and blog but they are also sisters! Connect with Em & Kate on Instagram @twobeinghealthy Visit their website and see all the amazing resources they have over there at www.twobeinghealthy.com Check out their youtube channel https://m.youtube.com/channel/UCWHlZrG0_YXZX-8IZ...

Oct 08, 202054 minSeason 1Ep. 8

INTERVIEW: Mariah Gillaspie

We are back this week and we are chatting with Mariah. Mariah is the mother of Emma & Abby, two adorable little girls that are the only two known people in the world with their rare disease. The Gillaspie sisters share a mutation on one of their genes that causes seizures and severe developmental delays. Mariah started the non-profit Lightening and Love Foundation to raise awareness, advance scientific research, a find a cure for diseases caused from a mutation in the THAP12 gene. __________...

Oct 06, 202039 minSeason 1Ep. 7

INTERVIEW: Brooke Norton

Hey peeps ! I am back this week and we are chatting with Brooke. Brooke is the mother of Evan, a boy born with “designer genes”. He is only a handful of people worldwide with his particular genetic condition, related to gene RPL10. Brooke is also the creator of Everyday Evan, her families blog that is striving to provide hope, Joy, Education, and prayers for families who find themself in a similar situation. I’m you host Theresa, So lets dive in Welcome Brooke, thank you so much for sharing your...

Sep 29, 20201 hr 5 minSeason 1Ep. 6

INTERVIEW: Billy Price & Billy Footwear

This week we sat down with Billy, the CEO of Billy Footwear to get his story and why he created his footwear line and what makes them so special for the rare disease community. As many people know Owen has Beckwith-Wiedemann syndrome as well as Hemihypertrophy. Hemihypertrophy is a rare disease that affects usually one side of someone’s body making it larger than the other which can present a major problem for people trying to find appropriate footwear. Billy has created a brand that provides fa...

Sep 22, 202030 minSeason 1Ep. 5

INTERVIEW: Amber

September is childhood cancer awareness month, where we recognize the strongest cancer fighters there is. This week we sat down with Amber. The mother of Vivian. A 3 and a half-year-old BWS warrior and cancer fighter who is currently fighting stage 4 Wilms Tumor. She shares her story of managing cancer during COVID and the frustrations as well as the blessings that come along with it. The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to c...

Sep 15, 202042 minSeason 1Ep. 4

Minisode: 9.11.Never Forget.

A day we will never forget through the eyes of my 6th-grade self. The world has been in a constant state of turmoil, and we sometimes forget the lasting impact it can have on children. Opening up the books I made for September 11 brought me right back to the classroom I was in when it happened. Reflecting on this day and remembering the effects it had on me is crucial to remember how events such as 9/11 or events in our own daily life with a rare diseases can affect the little ones around us. Co...

Sep 11, 202010 minSeason 1Ep. 3

Minisode: When RARE. Found Me

This one might be a little difficult for me. As much as I put my family out there it doesn’t make sharing my story any less difficult. My story isn’t tragic. It’s not depressing. It actually is quite the opposite. Don’t get me wrong there are hard times, there’s a struggle, and loads of stress and uncertainties But among all the bullshit there are more blessings than I can count. I’ll be honest Rare disease never crossed my mind. Until it decided to stake a claim in my home and live there foreve...

Sep 08, 202011 minSeason 1Ep. 2

INTERVIEW: Angelia Samae McClellan

This week we are throwing it back to our very first episode we did via video with Angelia over a year ago! . Angelia is a BWS (Beckwith-Wiedemann syndrome ) mother who shares her unique struggles with her daughter. Her daughter does not show the more obvious BWS signs which can cause many children to go undiagnosed. Angelia hopes her story and experience can help other mothers find courage and strength to fearlessly advocate for their children every day. The CUBE and OOLER systems are two really...

Sep 06, 202030 minSeason 1Ep. 1
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