Better way to raise awareness?

Most of the readers who visit my blog on a regular basis know that the aim of my blog is primarily to raise awareness of the rare neurological condition that I have, called Moebius Syndrome. Some of my posts may not relate directly to it but I try very hard to make sure that most of them do. It’s important for me to be totally transparent and document things that I may be embarrassed by (relating to Moebius) because that’s part of raising awareness, showing the struggles that we with Moebius face on a daily basis. 

So, having said that, I share this blog on Facebook and Twitter maybe a little too much. I tweet at anyone who will listen and I fear that it may be annoying to some of my followers. Although, as I am typing this, Lance Bass just RT’d me so that’s pretty awesome. 

So my question to you, dear blog readers, is this: What is the best way to raise awareness of Moebius and where is the best place to share this blog so that people can read more about it? Please, if you are reading this, I would really love some feedback! 

In case you’re new to my blog or as a refresher to those of you who aren’t, here are some links where you can find more information about Moebius Syndrome. I really encourage everyone to visit them and learn more! 

http://www.moebiussyndrome.com

http://www.manyfacesofmoebiussyndrome.com

And if you want to follow me on Twitter, I am @CanadianDuck007

Thank you all so much!

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2 thoughts on “Better way to raise awareness?

  1. Don’t know about online, but I’ve found that the best Real Life way to raise awareness is just doing things you’re interested in and passionate about, and sharing info about Moebius when you want to. People are usually interested in learning more about people who they have an invested ongoing relationship with.

    But I (obviously) like writing/blogging, too! Both are great in different ways.

  2. Hello! I just found your blog during a google search. My son is 6 months old and has Moebius. I would like to connect with other people who are familiar with Moebius since this is all new for us. I’ll tell you a little bit of our story, ask a few questions, and hopefully you will respond. My son was born on February 14 this year. He was admitted to the NICU after birth because of heart issues (which are no longer a serious concern, thank God!), but remained there for over 5 weeks due to feeding issues. His tongue was tiny and barely moved. We saw countless specialists, but no one had ever seen a mouth like his. As a result, there was no diagnosis, prognosis, or treatment plan, so he had a feeding tube placed. We are Christians and have been praying for God to heal my son’s tongue so that he will be able to eat and speak. He is still young, so he is not speaking (just babbling) yet, but I am thrilled to share that he has been eating 100% by mouth since July 1. My son also has a clubfoot and Poland Anomaly, which has only affected his left hand and fingers (they are smaller). After weeks in the NICU and countless outpatient appointments we still had no diagnosis. On July 30 we traveled to another Children’s hospital for second opinions. Within a few minutes of our Genetics/Cranio-facial appointment they diagnosed him with Moebius. My son can smile, wiggle his nose, move his eyes up and down, close his eyes, and make other facial expressions. His tongue is still slightly smaller than average, he cannot move his eyes side to side, and he cannot move his eyebrows up.
    So I’m wondering if you can tell me about yourself. I just want to get an idea of what to expect. Have you seen specialists or had any surgeries that were helpful? Any advice you can offer would be greatly appreciated.
    I am new to blogging, so I do not know how I will know if you respond. My email is jen.trujillo1@gmail.com
    if you would like to contact me that way.
    Thank you!

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