UNMC researcher focused on breakthrough medical therapies for rare disease after niece's diagnosis

[Omaha Steve]

When Julie Burtwistle called her sister Tammy Kielian, left, to tell her that Julie's daughter Olivia, right, had been diagnosed with a rare disease, Julie asked the UNMC researcher if there was anything she could do.

http://www.livewellnebraska.com/health/grace-unmc-researcher-focused-on-breakthrough-medical-therapies-for-rare/article_dd4d4866-179f-511d-a957-7728b29e6ca6.html

Posted: Sunday, December 6, 2015 12:15 am | Updated: 9:50 am, Sun Dec 6, 2015.
Erin Grace / World-Herald columnist

The phone call came on a Monday afternoon in 2011, and the news was as bad as they had feared.

Tammy Kielian listened to her distraught sister in Colorado confirm the worst.

Julie’s 7-year-old daughter, Olivia, did have a rare and incurable neurodegenerative disease known as juvenile Batten. It would steal Olivia’s ability to think, to talk, to walk, to eat. There was no cure. This would eventually kill her.

As Julie Burtwistle sobbed into the phone, she had one request for her big sister in Omaha. Tammy is a neuroimmunologist who works in a University of Nebraska Medical Center lab studying diseases in the brain. Perhaps there was something she could do to help Olivia.

FULL story at link.