Moebius Syndrome Foundation Administration

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Moebius Syndrome Awareness Day

Moebius Syndrome Awareness Day Activities


Moebius Syndrome Awareness Day 2014:


Moebius Syndrome Awareness Day is an event which is celebrated globally each year on January 24th- the birth date of Professor Paul Julius Moebius, the doctor who first diagnosed the condition in 1888.

The aim of Moebius Syndrome Awareness Day is to raise awareness about this rare condition and to educate others about it. Each year participants are encouraged to wear purple and raise awareness through various means and channels.

For more information on Moebius Syndrome and Moebius Syndrome Awareness Day please visit www.moebiussyndrome.com and www.manyfacesofmoebiussyndrome.com

 


Being Intentional with Social Media on MSAD
by Kevin & Sarah Lockwood

 

We put together the following thoughts and ideas about how we can all be effective and intentional in our social media postings for MSAD 2014. BRANDING: The issue of branding is huge in the business world; it basically means using a common set of images and logos to represent your company so people start to recognize the brand when they see it in various places. The same can be true for Moebius Awareness. By updating your profile picture with MSAD graphics, you can build visual awareness for the cause... and the more people that participate, the more others on Facebook will see the same graphic and take notice of the trend. Additionally, cover art (the wide image at the top of your wall) can be branded the same. You can download two profile pics, and a cover art image here: http://lockwoodconsultinganddesign.com/profile1.jpg http://lockwoodconsultinganddesign.com/profile2.jpg http://lockwoodconsultinganddesign.com/msad14.jpg

WHAT MESSAGE TO COMMUNICATE?
The first thing to think about when doing an MSAD post is the message you're sending. While some people post photos or celebratory messages, an important thing to remember is that you'll probably people reading your post who have never taken the time to learn about Moebius. Since the whole point of MSAD is awareness, why not tell your Facebook friends what it is, even if you're sure they already know. For example, you could post a photo with a caption like this: "Today is Moebius Syndrome Awareness Day and I'd like to ask everyone to take a minute and learn about my self/son/daughter/grandchild's condition." Then, you could write a short description of what it is, or paste a link to the Moebius Syndrome Foundation's definition (short link: is.gd/WhatIsMoebius) or the Many Faces of Moebius Syndrome's MSAD '14 page (short link: is.gd/MSAD2014).

USING #HASHTAGS
Whether you normally use them or not, hashtags can be a great way to let people follow trending topics, however they're also popular for communicating extra thoughts, messages or emotions in your post. This year for MSAD, some people are using #moebius or #MSAD2014. By using hashtags like these, others to click the text and Facebook will show them all the posts that included the same hashtag. While these short hashtags are great, you can also use a longer hashtag phrase and communicate extra meaning, such as #MoebiusAwareness or #ISupportMoebiusSyndrome. The sky's the limit when it comes to crafting hashtag phrases, so get creative. Also remember that you can include as many hashtags as you want in a single post, so feel free tack on as many as you'd like.

GOING "VIRAL"

Finally, social media can be most powerful when topics jump outside of your own circle of friends. Although you could ask all of your friends and family to post a link or a definition of Moebius for their own status updates, a more creative way is to have them show their support visually. This week, spread the word about wearing purple to all your Facebook friends, your family, your kids school teachers, your coworkers, and anyone else you can think of. Then, ask them to take a picture of themselves on Friday and post it for the day as their profile picture. Make sure to encourage them to tag you in the picture and to include a reason why they're wearing purple. You could even send them a private message on Facebook and provide a sample post. For our friends, we'll be asking them to post the following: Today is Moebius Syndrome Awareness Day and I'm supporting _____(name) by wearing purple. Moebius Syndrome is a rare congenital condition that affects a person's outward appearance, including their ability to form facial expressions, move their eyes, or have normal-sounding speech. But if you know ___ (name) like I do, then you know those things don't hold him/her back at all. #imsupporting___(name) #moebiusawareness http://is.gd/WhatIsMoebius

 


 

T-Shirts

Moebius Syndrome Awareness Day Shirts are available at www.freshprintz.com/moebius


"I'm Smiling on the Inside!" Stickers

The Moebius Syndrome Foundation is providing a label template for labels to wear for Moebius Syndrome Awareness Day on January 24th. You can download the document and print the labels on a color printer. The labels contain the Moebius Syndrome Foundation logo with the words "I'm Smiling on the Inside" in purple. Use labels that are Avery 5163 compatible. Labels can be purchased at office supply stores or on the Internet. You can do an Internet search to locate good prices for labels that are 2" x 4," 10 to a page.

Download "I'm smiling on the inside!" stickers here.

You can also wear the labels / badges on Rare Disease Day on February 28th.




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