Interview
Hope for Kinsley: Facing TUBB4A with Courage and Care
with Sarah and Ryan Marta
August 6, 2025

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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