What a Difference!

A year ago…..I was on vacation with my family taking in the happy and fun of Disneyland. I had no idea I was losing my vision. I didn’t know what LHON was or that it even existed. What a difference a year can make.

I recently returned from participating in the annual LHON Symposium held with the UMDF Conference in Pittsburgh. It was a fantastic experience that gave me the opportunity to meet others just like me! Others unexpectedly affected by LHON. 

The symposium was great in so many ways! In fact, the whole trip was a really great experience! …. First time traveling blind….. Two words: airplane bathrooms. Holy blind girl! Those were fun!  Anyway…. I’m not going to give you every crazy detail of the trip.  I mean, I could….. but, we would be here all night! 

Speaking and moderating 2 panels at the symposium was awesome!! It went really well and all the panelists did a fabulous job sharing their LHON journeys. I  loved being a part of this day. Sharing my journey and talking about this blog was a THRILL! Being up in front of a group is very comfortable and fun for me. Surprised? C’mon… I do my “Live with Maria” thing every week as a fitness instructor! My friends know how I do!   

There were many other speakers, doctors, and scientists who spoke on topics important to the LHON community. From the latest research to psychology to fundraising. Funding is always needed for research…… and I plan to jump on the fundraising train real soon!  

The BEST part of the trip was meeting and connecting with all those who made it to Pittsburgh, whether you are affected, a carrier, or just someone who supports a loved one…. Pittsburg was the place to be! I had talked to many of you on the phone in prior weeks and meeting you in person was like finding a long lost sibling!  There was an immediate bond between everyone! We all spoke the same language and asked the same questions. We laughed and swapped stories every minute we could. It was amazing to be around people who really understood.

Getting involved and creating these new “unexpected” friendships is essential to my well-being. The LHON connections are priceless! Looking forward to Virginia/Washington DC in June 2015!  Get connected and plan to go!

 A year ago…..The last thing on my mind was “What would I do if I became blind?” Well…I guess I would write a blog called……. Girl Gone Blind.  What a difference a year can make.

Thank you Lissa Poincenot for giving me such a great opportunity and for all you do in the LHON community!