Raising Awareness and Living Life: Ellie White

Video credit: Mile-Hi Skydiving Center, Inc.

A global spokesperson for a rare genetic disorder is building her speaking and engagement skills through her education at the Community College of Aurora.

When Ellie White was diagnosed at the age of 7, she was the first living person in Colorado identified with Wolfram Syndrome, which affects about 1 in 700,000 people. The disorder is linked to diabetes, causing vision and hearing loss, and life-threatening respiratory problems.

Living with the condition since she was young, White has been an ambassador for diabetes organizations since she was four years old. Around 2012, she started the Ellie White Foundation to advance research for Wolfram Syndrome.

“I’ve grown up loving helping people and being really passionate about motivating other people to know what their full potential is,” White said.

This passion has led her to pursue a career as a motivational speaker. Taking speech and psychology classes at CCA, White said she expects to graduate with her associate’s degree in December. Her plan is to attend Metropolitan State University in Denver to pursue a degree in communication.

White points to TRIO student services at CCA as one of the reasons she was able to build leadership skills and become more involved in student organizations. During her time at CCA, White got involved with the National Federation of the Blind, attending the National Association of Blind Students Leadership Weekend in Maryland in June. In the beginning of July, White said she went to the national convention in New Orleans.

These experiences have built her confidence and enabled her to more effectively advocate for Wolfram Syndrome research and treatment.

“Most recently, I had an amazing speaking opportunity about Wolfram Syndrome and my foundation at Princeton University,” White said. “The public speaking and communication classes I’ve taken at CCA have helped me stay confident during my presentation.”

For her foundation, White said her goals include being there for other Wolfram Syndrome patients, and raising money for research and treatment. On September 25, White raised about $25,000 from a birthday walk charity event.

“The money is donated to Dr. Fumihiko Urano at Washington University in St. Louis. The things he’s done are just outstanding,” White said. Some years ago, Dr. Urano was able to start the first Wolfram Syndrome clinic drug safety trial with White as the first test patient.

Internationally, White said families as far as China have reached out to her, and that a research facility in Estonia asked her to help with fundraising.

“I want to be there for other patients. My other goal is to spread awareness, reaching out to medical facilities, research facilities, and doctors,” White said.

Outside of school and raising awareness for Wolfram Syndrome, White recently went skydiving, a lifelong dream. The experience has made her more confident and strengthened her belief that she can do anything she sets her mind to. All of which she says, she could not have done without the Community College of Aurora.

“My biggest message is don’t let anything stand in your way. Go do it, go live life,” White said.