Tim / Open letter 2016

Hi! I’m Tim Smith President of the Many Faces of Moebius Syndrome. Each year I write something new about our community and the changes that are taking place in it. This year I want to do things a little different and talk about our community and it’s future. 


We are all part of a global Moebius syndrome community which has support organizations, and non profits based around the world. There is documentation which shows that people with Moebius syndrome and their families started forming the nucleus of our community long before any of the current organizations were conceived. In the early 1990’s Vicki McCarrell, Lori Thomas, and others who have since moved on brought the community together by word of mouth, mail, meetings at their homes, and newsletters. Vicki did this and many other things without the assistantance of a modern computer and the organizational software which comes with it. What she achieved is mind blowing and nothing short of a miracle. 


In 2007 when I came along Moebius syndrome was alive on the Internet in small groups, which for the most part were not connected. Using Facebook and the resources at hand I, Donnie Downs, Gavin Fouche and many others, some who have moved on, started connecting everyone and built a global Moebius syndrome community on the internet and social media. 


Many people consider Vicki and I to be the two leaders of our community. Let me say this, everything that we have done would not have been possible if it weren’t for the work Vicki did before us. I could never fill her shoes nor would i even try. I’m flattered and honored that there are people out in the community who think this. Vicki, Rebecca, and I met briefly for a meeting at the last conference. We pledged our support for each other and talked about this. I for one am not too comfortable with the title leader. So we agreed that we would be the two caretakers of the community. The actual leaders of the community are you. All of the organizations were built based on the needs of the community at the time. We need to stay that course and continue to let the needs of the community determine our direction. 


We are very fortunate living in the United States to have two major organizations that for the most part do different things. To coin a phrase, “We have the best of both worlds.”  I want everyone in the community to support both organizations equally with the same passion and vigor. 


One of the awesome things that Vicki, Rebecca and I were talking about which most people aren’t aware of is that our community has become sort af a template for other rare disease groups to form their communities around. They are coming together and forming their own friends groups, awareness days and so forth. It’s all because of you. Please give yourself a pat on the back for a job well done. You deserve it.


I want our community to be a community that continues to help and support each other through the good times and bad. Yes there are going to be some severe arguments and disagreements. Those are all a part of life’s lessons that make us stronger and wiser. I want this to be a community where we focus on everyone’s needs and continually try to do better. I don’t want to see our community expand and have branded hotels popping up offering membership rewards to whomever will stay the night. We’re better than that. I want this to be a community which continues to grow and continues to try to empower each other.


I have Moebius syndrome and often times in the real world when I try for something that I know I’ll be good at and don’t get it I feel alienated and discriminated against. Even when the logical part of my brain tells me this isn’t true, and it wasn’t done intentionally. I know a lot of others feel the same way. It’s very important that we take great care to not let the same kind of things occur within the community that occurs outside of the community.


Now after reading this your probably thinking, Tim those are some pretty big ambitions. Your crazy to think they are going to happen. Perhaps!! But if someone said nine years ago that we would all be part of a global Moebius syndrome community that was a model for other rare disease communities and our awareness day would trend on Facebook five years after it’s conception we would probably call them crazy to.


Take Care!
Tim Smith

Author: Tim Smith

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