So, by now most of you probably know that I believe that it is my mission in life to raise awareness of Moebius syndrome. In case this is the first blog of mine that you’re reading, (welcome!) Moebius syndrome is an extremely rare neurological condition. No one knows for sure how many people it affect, but it is thought to have a prevalence of about 1 in 500, 000- 1, 000, 000. Moebius is an underdevelopment or malformation of some of the 12 cranial nerves and causes facial paralysis, limb abnormalities, speech problems, feeding problems, etc. What people sometimes don’t understand is that Moebius doesn’t affect intelligence. Just because we look or sound different doesn’t mean that we have any cognitive issues.
My mission is to raise awareness of Moebius so that people don’t have misconceptions about us. I want people to know that we are just like every other person, we just look a little different or sound a little different. I’ve had so many negative encounters over the past 23 years, I don’t want future generations to have to go through that. That is why I want to raise awareness right now.
i have been sharing my blog on Facebook and Tweeting at anyone who will listen but there has to be a better way to get the word out there. I want to go national and global with this, that would be my goal. I know that it will be difficult but I am willing to put in the time and effort. Whatever it takes, I will do it if it means getting information out there about Moebius and educating people.
Please let me know your thoughts and ideas on better ways to raise awareness. Any comments will be so greatly appreciated! Please, I am desperate for ideas!!
Thank you! Just trying to take what I know and make the world a better, more tolerant place!