Hope for Kinsley: Facing TUBB4A with Courage and Care

Interview

Hope for Kinsley: Facing TUBB4A with Courage and Care

with Sarah and Ryan Marta

August 6, 2025

Sarah and Ryan Marta, proud parents of three girls from Central Texas, began noticing that their middle daughter, Kinsley, was slow to reach mobility milestones in her early years. During a visit to a friend’s house, concerns about her vision were raised, prompting a check-up. What began as a single hospital visit quickly turned into many. An MRI revealed abnormal levels of white matter in Kinsley’s brain—leading to the devastating and confusing diagnosis of a nano-rare neurodegenerative disease called TUBB4A.

Looking high and low for help, they eventually discovered n-Lorem, a non-profit that discovers and develops personalized medicines for extremely rare individuals like Kinsley.

Kinsley is lively and cheerful with infectious laughter and a bright smile that lights up every room. She loves singing at the top of her lungs, swinging in the fresh air, and spending endless hours playing with her sisters and cousins. Kinsley uses a mobility walker to get around, but one of her biggest dreams is to run. When asked what she’d do after running, she simply says, “I’d run some more.”

On This Episode We Discuss:

2:35 – Early signs of Kinsley’s disease and her TUBB4A diagnosis
4:00 – Fight or flight – Sarah and Ryan did all they could to seek help
7:30 – Defining TUBB4A
9:40 – Kinsley’s challenges today
11:00 – The impact rare diseases have on families
14:40 – Kinsley wants to do more, and an n-Lorem medicine provides optimism

Watch on YouTube:

Ryan and Sarah Marta are parents to three daughters: Hadley, Kinsley, and Whitley. Their middle daughter, Kinsley, was diagnosed with TUBB4A-related leukodystrophy in May 2023. Sarah is a former educator turned full-time mom, and Ryan is the co-owner of a sample and display company. In response to Kinsley’s diagnosis, Sarah co-founded the Kinslow TUBB4A Foundation and has found a deep passion for advocating on behalf of TUBB4A families.

Credits

Hosted by: Dr. Stan Crooke.
Videographer: Jon Magnuson of Mighty One Productions.
Producers: Kira Dineen, Jon Magnuson, Andrew Serrano and Amy Williford.

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