Learner Spotlight: Meet Linda Miron

Welcome to the first Learner Spotlight for our Online Learning Micro-Courses. In the spirit of back-to-school season, we’d like to highlight one of the best educational resources we have to offer. In this series, we’ll be sharing the stories of individuals who’ve completed these courses and how the experience has deepened their understanding.

Today, we’re proud to feature an interview with Linda Miron, whose son lives with MOG Antibody Disease (MOGAD).

Can you briefly tell us about your diagnosis journey?

My 33-year-old son Adam has MOG Antibody Disease (MOGAD). He presented with Optic Neuritis (ON) and partial vision loss in one eye in 2018 when he was 26. Initially, it was thought to be idiopathic. After 5 days on IV steroids and testing for every other autoimmune disease, his vision returned to almost normal. One year later, another episode of ON occurred, although not as severe. He underwent additional testing including antibody testing which led to MOGAD diagnosis.

What led you to take SRNA’s Online Learning Courses?

After his diagnosis, we found the SRNA website. I wanted to find out everything I could about rare neuroimmune disorders and was searching for information specifically about MOGAD.

How did you first hear about the courses?

I received an email from SRNA announcing the micro-courses.

What were some key takeaways or “aha” moments you had while taking the course(s)?

I was surprised to learn that some of the disorders present with similar symptoms initially, but further testing is what determines the final diagnosis.

How has your understanding of rare neuroimmune disorders evolved after taking the course(s)?

This course has not only brought clarity to my understanding of MOGAD but also to the other five rare neuroimmune disorders and their symptoms.

Would you recommend these courses to others in the community? If so, why?

Yes, definitely! I would recommend these courses to anyone seeking information. I particularly liked the videos by Dr. Greenberg. He breaks down each disorder in a very understandable format.

Have you shared what you learned with others—family members, doctors, or peers?

I have shared the course information with my son and urged him to take the courses.

What advice would you give someone newly diagnosed or just starting to learn about these disorders?

Make sure your doctor is familiar with rare neuroimmune disorders and their treatments because many are not, particularly in a hospital ER. Familiarize yourself with the SRNA website as there is a lot of information there. Join a Facebook group that is disease-specific. We joined one by The MOG Project. It has been a valuable resource and support group for our family.