Navigating Uncharted Waters

In one second your life can take a 360 degree turn. Everything can change in the blink of an eye. Julie’s life turned upside down when she became ill in 2009. Her illness began with vision problems and quickly progressed into something much more serious. After seeing multiple specialists and being left unable to work, Julie was diagnosed with Mitochondrial Disorder. A rare genetic condition that affects the way human cells generate energy.

Before Julie became ill, she had been a RN. Julie had dealt with adults who had acute injuries or illnesses, but rare disease was completely unfamiliar territory to Julie.  

“I spent a lot of time feeling incompetent as a nurse since I had no clue about the disease being pinned on me. I felt overwhelmed, confused, and downright terrified at the prospect of having a complicated rare disease.”

Julie’s life was completely altered for what seemed like forever.

“I thought I would never be able to do anything for the world again.”

Julie would prove that she still had much more in store for this world. As time progressed, Julie realized she was not the only one who needed education, resources and support in order to figure out her illness. Two years after being diagnosed, Julie contacted Physicians and patients, hoping to help set up some sort of group.

Mito New England began with one meeting of about 20 attendees. From there, Mito New England grew into something much bigger.

Julie’s support group soon transformed into a necessary tool not only for Mitochondrial patients, but for all chronically ill patients. The tool of education. Julie began working with other patient advocates and medical physicians themselves. Over time and with continued exposure to the rare disease community, Julie realized that the Mitochondrial Disease community was not the only disease community which needed more awareness and support.  It is for this reason that in 2016, Mito New England was changed into Rare New England. A unique organization meant to be a tool for everyone with any type of rare disease.

When Julie Gortze became ill, she was no longer able to work and was left wondering how she could contribute to society. Now Julie has built a non-profit organization that is a helpful resource to everyone suffering from rare disease. Julie has become a patient advocate and hopes to improve the future for all patients suffering from rare disease. Truly an inspiration, Julie took a disease and turned it into something which can help thousands in need.

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