Monday, May 06, 2024

A Good Cause for A Great Member of The True West Team

 May 6, 2024

   We are certainly blessed to have Mariah George as our Digital Marketing Manager. She rides herd on all our social media and YouTube content. And, Mariah has been doing this since 2020, yet we’ve never met her in person! She was hired during the midst of COVID, and has always worked remote from her home in Florida. At the time of her hire, she didn’t know how blessed she would be to work fully remote.

The George Family
Luca, Nicholas and Mariah

   In February 2023, Mariah’s son, Luca, was diagnosed with an ultra-rare genetic condition called SPATA5L1 Related Disorder. Luca was only one and a half years old and the diagnosis came after months of searching for a cause of his drug-resistant epilepsy, developmental delays, feeding difficulties, and profound hearing loss. Working from home allows Mariah to provide Luca with the 24hr care he needs. Luca is now two and a half years old and has upwards of 20 seizures per day and isn’t mobile, but he is hearing after receiving his first cochlear implant! Luca is 1 of approximately 60 diagnosed world-wide with SPATA5L1 Related Disorder.    The George family jumped into action and launched The SPATA Foundation in November 2023. The SPATA Foundation is a non-profit organization dedicated to those affected by SPATA5 and SPATA5L1 Genetic Disorders. While Luca has SPATA5L1 Disorder, they have joined forces with approximately 100 other families affected by a closely related disorder called SPATA5 Disorder.

   The next 5-6 months will include analyzing patient samples, running screens on drugs, and creating genetically modified tadpoles. At the end of the project, the hope is one drug will stand out as a potential treatment option. Upon completion, The SPATA Foundation will need to fund the remaining $50,000 of the project.

   I’m calling on all our True Westerners to help The SPATA Foundation out if you can, even if it’s just by sharing! You’ll not only be helping one of our True West family members, but kids all over the world with these disorders. You can learn more about The SPATA Foundation at and make a tax-deductible donation by clicking HERE.


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