I’m just sitting here on Twitter, Facebook and thinking. What would be the most effective way of raising awareness of Moebius Syndrome, as that is my main goal right now. I’ve been tweeting at anyone that will listen. I’ve been sharing my blog on Facebook. I’ve had a couple people now tell me that I should write a book about my life and about Moebius. I have always thought about doing that and I would love to, but I don’t even know where to begin. Writing it would be the easy part. Where do you go from there? Getting a book published is very difficult, I imagine. Then there’s an even bigger dream of being on TV and sharing my story and all of our Moebius stories in that way. That’s even more far fetched, I know. These are big dreams, I also know that. I just want the best platform in which to get awareness out there. I want to do a fundraiser in part to raise awareness of Moebius but also to raise money to be able to send people to the Moebius Syndrome Conference next summer. I know there’s some of my Moebius friends who want to go but just can’t make it work financially. I want to raise enough to be able to send them. The Conference is such an amazing, life changing experience and I think everyone with Moebius deserves to experiences it, to learn and to meet others like them. It’s an amazing experience and I will do all that I can to make sure that people are able to attend because it’s something that I strongly believe in. Like I said, I’ve been tweeting a link to my blog to everyone on Twitter who has some kind of presence. Well I tweeted at someone who I am a huge fan of. Her name is JoJo and she’s had hit songs and she was in the movie R.V. I still love her older songs! Baby It’s You and Too Little Too Late are always playing on my iTunes. And I own RV on DVD and I love that movie. So anyway, I’m a fan of hers. I tweeted her a link to my blog and she tweeted me back and said that she enjoyed it, and actually tweeted me a few times saying she way sorry to hear about my dog passing away and such. I just have to say that I was so incredibly moved by her kind words! And I was amazed that she took the time to actually tweet with me for a bit. If she ever reads this I just want to say thank you so much for taking an interest in me and my story! I would love to meet you someday and hang out. You seem so awesome and so genuinely nice. Thanks again for reading my blog and hopefully I was able to bring to light something new that you’d probably never heard of which is Moebius Syndrome. This is definitely what my blog is for, to educate people on what Moebius is. I really think that education is the key to tolerance and I really am aiming to make the world a more tolerant place. I’m just trying to do what I can to raise awareness.
Does anyone have any other ideas on how to better raise awareness? Any ideas on where i can share my blog to get it out to a bigger audience? I am open to all suggestions!
Thanks so much for being here and reading what I have to say, everyone! We can make the world a better place.