The Emotional Impact of Going Blind and Living with LHON

Starting in 2013, there has been an annual LHON Conference held in conjunction with the United Mitochondrial Disease Foundation’s “Mitochondrial Medicine” Symposium. With much thanks to Lissa Poincenot for bringing me on as her trusty sidekick in 2014, I help plan and organize this important conference with her. I reach out to folks who might be a fit on our patient panels, moderate panels, and I speak about different topics if I am needed during this day long event. It takes a lot of time, effort, and phone calls to make this day happen.

Lissa and I spend many hours doing the work for months before the big day. I say “work” because it is… but, it’s also a passion for me. A passion that drives me forward in the right direction everyday as an Advocate for this rare disease, and the people who suffer from it. Keeps this blind girl out of trouble too!

A group photo of conference attendees

We held an amazing 2016 conference this past June in Seattle, WA. Just look at all the happy attendees in the photo above! It was a 5 Star event and I want to share it with you! Below are a few of the session videos that I was involved in as the moderator or speaker. Click here to go to ALL of the videos documenting the conference. Lots of good stuff…if I do say so myself!!  So, grab yourself a snack, sit back, and watch! Warning: these videos may include laughter, inspiration and informative conversation. 

 LHON EMOTIONAL ADJUSTMENT with Jeremy Poincenot and Maria Johnson (ME!)

LIVING WITH LHON” Teen-Young Adults Panel

“LIVING WITH LHON” Adults Panel

Be sure to check out the other videos from the conference!

2 Comments on “The Emotional Impact of Going Blind and Living with LHON

  1. Maria, I am continually impressed by your strength and attitude; you are still a fabulous mother as well as professional, and now an advocate for yourself and others who have the extreme shock of losing sight. I am so sorry that I did not know you were in Seattle, as that is where I live and would love to have been at the event as your advocate and supporter!

    Love, Your Cousin Barbara

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  2. Thank you too Maria with your help with the conference. Your panels are what truly gave me as a parent hope that life goes on. There are jobs that can be obtained, and yes with struggles there does come laughter. You and Lissa are a great team. I hope I get to see what you guys do in Nashville 2018!

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