Because We Are Strong

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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Because We Are Strong

INTERVIEW: Mariah Gillaspie

October 06, 2020 • Theresa Thomas & Kristine Hoestermann // Guest: Mariah • Season 1 • Episode 7

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.

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Support THAP12 >> https://findyourrare.com/collections/rare-aware-apparel/products/copy-of-greater-than-chronic-pain-t-shirt

Connect with Mariah and Lighting & Love Foundation

Foundation Website: www.lightningandlove.org

GoFundMe: gf.me/u/yqhc2k

Foundation Instagram: https://www.instagram.com/lightningandlove/

Foundation Facebook:https://www.facebook.com/lightningandlove

Introduction Video: https://www.youtube.com/watch?v=5WyVp2dTR9c

The CUBE and OOLER systems are two really cool gadgets that fit over the top of your mattress and use water to control the temperature of your bed. Right now Chili is offering my audience a really great deal. When you go to Chilisleep.com/findyourrare20, you can get 20% off the CUBE all sleep systems with findyourrare20. I hope you’ll check out Chili and see why I love their products so much.

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People on this episode

Kristine Hoestermann

Host