Marilyn Schmiedel
Pflugerville, Texas

Marilyn is a Semiconductor Device Engineer, which means she understands what microchips do and can discuss statistical process control and yield improvement.  In short, “connecting the dots” and fixing things is her job.  She likes to apply her engineering thought process to Leukodystrophies to better understand them.  In fact, she researched, found references, and combined the data that was the basis of a medical research paper published with Dr. Veronica Urbik, Dr. Josh Bonkowsky, and Haille Soderholm. 

Marilyn’s daughter has an undiagnosed Leukodystrophy, meaning the gene mutation causing her disease is not yet identified.  “Because she is without a group,” says Marilyn, “it’s very difficult to diagnose/treat her and many doctors stop trying. I want to help families find their ‘group’ for kids like Maddy. I believe the best use of data is to help connect families and research so that our loved ones are more than a data point on a chart and can thrive.”

As part of Protect Texas Fragile Kids, Marilyn testified and participated in rallies at the Texas Capitol to support legislation for medically fragile Texans.  Her family also belongs to U.R. Our Hope, a patient support group for rare and undiagnosed diseases in Austin, Texas.