We are entering into the final month of our 6th Annual Moebius Syndrome Awareness Season. January is a very special month for us because each year we see our community rally together, wearing purple, spreading awareness and celebrating Moebius Syndrome Awareness Day around the globe. It’s a beautiful site and I thank each and every one of you for allowing us to be a part of it.
When we first came up with the concept of MSAD years ago there were less than 50 people in the Moebius Friends Facebook groups. Probably only a couple of hundred people on the various Moebius Facebook pages. It was a very small community. Now there are several thousand people in our community from all around the globe talking in various languages, sharing stories, and supporting each other. Since so many new people have come into our community in recent years we decided to go into the archives and provide a peak of the very first MSAD. It’s truly mind blowing to see how much we have grown in such a short period of time. Click on the following link to view the highlights from our first MSAD January 24 2011. www.manyfacesofmoebiussyndrome.com/yahoo_site_admin/assets/docs/take2.37180440.pdf Some of the news links are old and do not work.
We are encouraging everyone in our community to do Moebius meet ups again this year since MSAD falls on a weekend day. This year MSAD falls on the same Sunday as the NFL Conference Championship games are played. The reason I mention this is because in 1975 my mom decided to do a charity spaghetti dinner at our church on Super Bowl Sunday. Everyone told her to reschedule it because of the football game. She was stubborn (like me) and wouldn’t do it. Only one elderly couple came to her dinner. The NFL isn’t going to reschedule their playoff games for MSAD and we don’t want to see anyone doing a meet up and only have a few people show up. So my thought is let’s not fight it. Let’s embrace it and come up with ways people can watch the game and spread some awareness. We’re going to have a large screen TV at our meet up in Florida.
Every other year we encourage people to contact their local media and do stories about MSAD. In 2012 there were a couple dozen media stories. In 2014 we had close to 40 media stories in newpapers, radio, and television. It would be awesome if we could top those numbers in 2016.
As most of you know this year our Global Moebius Syndrome Community has it’s own Awareness Day website with over a 150 stories from our global moebius syndrome community. We hope you will share the website with the media www.moebiussyndromeawarenessday.org so that the world can see what our global community is all about. We will be adding more information to it on a daily basis.
I’ve been asked by a couple of people if we have press kits which will help them with the media? In 2011 Lauren Broadhurst a moebius mom from Australia said this:
"I was surprised by how much Jasper got out of MSAD. As a confident, bright and outgoing kid I have always felt that he just took the condition in his stride. Whilst I believe in spreading awareness, i never realized the impact having a MSAD would have on Jasper personally. The pride in his face from being the MFOMS Holiday Hero for the day was incredible- it dawned on me then that MSAD was important for him because it gave him the opportunity to celebrate who he is BECAUSE of meobius syndrome not despite it. I have always tried to ensure that Jasper never feels as though he is deficient or that he needs 'fixing', MSAD helped to consolidate this."
The answer to the question is NO. The MFOMS is not releasing a press kit. MSAD is about Jasper, Hannah Jade Devine, Caleb Downs, Soph Boffa, Kelsey Ferrell, Hayley Brang, and many others. We think it’s great if you want to mention us in your news stories, but it’s your day to tell your story.
If you want to do a media story for MSAD 2016 and aren’t sure how to get started email me at firstname.lastname@example.org and I will connect you with others in our community who have successfully gotten the media to publish their moebius syndrome awareness stories in the past.
President: Many Faces of Moebius Syndrome
Northern California Moebius Syndrome Awareness Day Get Together. Host: Marcia Abbott & Natalie Abbott. Click here to go to the Facebook Event Page.
Florida Moebius Syndrome Awareness Day Meet Up. Host: Tim Maher & Rebecca Maher. Click here to go to the Facebook Event Page.
Texas Moebius Meet Up. Host: Lauro Antonio Garza! Click here to go to the Facebook Event Page.
Colorado Moebius Syndrome Awareness Day Meet Up. Host: Kacie Nievesmassol & Jon Fisher. Click here to go the Facebook Event Page.