1) In a couple of sentences, how would you describe the aims of MSAD?
Answer. Gavin: The main aim of MSAD is, of course, to create awareness about Moebius syndrome and to educate others about it. But I think it also serves to make people aware of those who have Moebius syndrome and what courageous people they are, who all have extraordinary stories to tell about overcoming adversity in their lives.
2) Do you think this year’s MSAD achieved those aims?
Answer. Gavin: Yes, I believe it has. I find it so heart-warming each year to see the pictures that come in of people celebrating MSAD. As the saying goes, "Alone we are but a single droplet of water, but together we are an ocean."
3) Why is MSAD so important?
Answer. Gavin: When I was born very little was known about Moebius syndrome. Because not much was known in some ways it negatively impacted major events in my life. For example when I was born the doctors said I would NEVER be able to talk, and I would NEVER be able to walk, or later that I woud NEVER even be able to use my hands to write - but thanks to my parents, my mom in particular, who didn't take NEVER for an answer, I was able to do all of that.
4) Why is purple the color for MSAD?
Answer. Gavin: I believe the idea of wearing purple during the first MSAD came from a young lady by the name of Kelsey Ferrill. Purple is of course also the color of the Moebius Syndrome Foundation. It was, and still is, very important to us that all the Moebius groups and organizations take part. So it was also a nice little way to do that.
5) What were the successes of MSAD 2013?
Answer. Gavin: One of the greatest successes I think is that Moebius Syndrome Awareness day was celebrated on every continent on the planet. We received loads of pictures of people all wearing purple! There were also some who were featured in print and television news stories. Every year it just seems to get bigger and bigger!
6) Was there anything that surprised you about this year’s MSAD?
Answer. Tim: I was surprised by the number of friends of friends who participated in it. It's been an awesome experience to watch MSAD grow from year to year. The first MSAD seemed to focus around the immediate family members. The second year we brought in the grandparents, aunts, uncles, and cousins. This year it expanded to include more friends, friends of friends, and coworkers. The best surprise of all was to see the United States Military honor Hayley Brang!
7) What do you think could be improved upon for MSAD 2014? Answer. Tim: For the past three years MSAD has far succeeded my expectations which makes it difficult for me to point my finger at any one area and say we need to improve on this. The truth is that the global moebius syndrome community is the best rare disorder community in the world and they are the ones who have made MSAD so successful. I don't think we could improve on them even if we wanted to. :) The one thing I would like to see more of next year is “media coverage”. We did not go after it this year like we did in other years because we learned in advance that our media sources didn't want to do the same type of stories three years in a row. We took it in a different direction and we used over 100 social media sites to get the word out. This year we need to think outside the box to come up with some new ways to entice the media into doing more stories about MSAD 2014.
8) Do you have any particular goals for MSAD 2014?
Answer. Tim: The last time I checked the worlds population was around seven billion people. So our goal for MSAD 2014 is to spread awareness about Moebius Syndrome to each and everyone of them using any and all means at our disposal.
9) What advice would you give to someone who wants to be more involved for next year’s MSAD but doesn’t know how?
Answer. Tim: The easiest way to find something out is by asking a question! Send an email to anyone of our board members and we'll help you come up with ideas to get started. www.manyfacesofmoebiussyndrome.com/board_members Also in the very near future we will be launching a new program headed up by Gavin & Sophie that will allow more people to get directly involved with MSAD and the MFOMS. They will be telling you more about it shortly.
10) What can people who don’t have Moebius Syndrome do to get involved in MSAD?
Answer. Tim: There are a number of things people can do. 1. Go to the 2014 Moebius Syndrome Awareness Day Facebook event page and introduce yourself. Tell people there you want to be a part of the magic that is MSAD. www.facebook.com/events/346030682175891
2. Get an official Moebius Syndrome Awareness shirt from Fresh Printz and wear it with pride to show your support for people with moebius syndrome. www.thefreshproject.com/collections/tfp?constraint=moebius 3. Tell your friends, neighbors, and coworkers about our moebius syndrome community. Share the 100 plus personal stories that are on the many faces website with them. 4. Know that whatever your contribution is no matter how big or small it is greatly appreciated by the moebius syndrome community. We thank you for allowing us to be a part of your lives.
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