On August 8 2015 we had a MFOMS Virginia Meet Up! 42 people from 6 states came to it. We had a great day filled with food, fun, and love for each other. Here are some of the highlights from the day.
Hi, I’m Jessie. Most or all of you know me from previous conferences, get together, or just because I’m awesome and word travels fast. I truly was surprised when I found out I was going to be a guest speaker. No my mom didn't tell me, I was snooping, ha-ha just kidding, I was talking to her about this get together and asked who was going. She handed me her phone with the many faces of moebius page open and I looked around. I found the post and read over it. I saw I was a guest speaker and almost flipped out. My first thought was, have these people gone crazy? I'm not funny. And I’m not presenter material. I can't even give a school speech without feeling nauseous. But while I was thinking all this I was practically jumping out of my chair choking on a cracker I was so excited. Talk about mixed feelings.
I spent about 2 minutes trying to get my mom to tell me the “truth” about why she signed me up for this. Her answer was the same. “Me and Mr. Tim smith decided you were perfect for the part.” I spent the following 5 minutes saying she was crazy. I'm kidding. I was going ballistic not knowing what I would say. Would I share jokes? No, I’m sure they’re unintended jokes throughout the speech. Would I dance off stage while nervous laughing? Nah, I was raised better than that. But in talking to her I realized I should just be myself. Talking about my life, and how Moebius has affected me, since the last conference. Well let’s see. I’ve gone through 8th grade, passing with mostly straight a’s, got picked on for being ugly, missed all my moebius friends, and alphabetized all the magazines on the mail table. To be completely honest, I haven’t even really thought that I had moebius the past school year because everyone knows me. The weird girl who can't smile. Well Jessie, don’t you notice you have moebius in the 745 selfies you take every day? No not really. Because the beginning of the summer made a pact with myself that I wouldn’t care what anyone thought of me. That I was my own person and I was beautiful. Ha that lasted about a week before my cousin moved to Florida.
My mom said she was amazing. That she was a cheerleader. And my thought when she said we were going to see her was, am I gonna play the I’m so sick I can't move card. Or the I just got my heartbroken because I wasn’t accepted on the cheer team at the high school card. Yah that’s the one. Well, I was forced to go anyway. On the way there I thought she was gonna be blond and fabulous and have everything I ever wanted and be that one cousin who thinks they're better than their family. Well let me be the first to say. I’m glad she was none of those things. But she was a cheerleader and it kinda bugged me, since I got rejected from my high school cheer team. I learned we have everything in common. We like the same viners. The same musicians. The same authors. We are the same size. Were the same age. And we’re going into the same grade. So basically we are twins. Or so her sister Abby says. Oh her names Josie. After being a scared little chicken I manned up and talked to her. We hung out, put her mom’s clothes on hangers and in the closet, and went swimming with her. She is by far, my favorite cousin. I know Jessie that’s bad to pick favorites. But she just instantly became my best friend. When she came to my house, we played cards. Like about 500 games. We are crazy weirdly the same person. We look nothing alike, and she's about 5 inches taller than me, but she's still my best friend. And to be completely honest, I've never felt like I've had a best friend till I met her. Why does this relate to how moebius affects me? Because before I could ever be someone's friend, there was a part of me that reminded myself that I have a condition. Something that I thought would drive them away once they knew. But becoming Josie’s friend, turned that part of me off. Turned that emotion of fear off. If you’ve ever seen the vampire diaries, you would get the reference. And in writing this, I realized I had never told anyone that. And that I should give advice to all of you regardless of your age. That letting fear of being left out or being judged, or labeled cloud your judgement is not the way to walk through life. Don’t let the fear of striking out stop you from playing the game. Take it from me. I’ve been there, done that. Don’t let your mind trick you into believing that you can't be yourself. That you have to fit a stereotype. Fit inside a little glass box. That shows what other people want to see. Fit outside the box and be yourself. If the people accept you for who you are, they’re the right kinda people you should associate with. If they distance themselves from you, chances are, you're just another cluster of clouds during a stormy day. If people are mean, and rude, and judgmental towards you, just think of them as a grain of sand, on a large beach. They are everywhere and get washed away and replaced. You don’t need them.
Having moebius has taught me many things. And it has rewarded me with so much. I've learned that fitting in isn't everything. That sometimes you need to be yourself, not a perfect role model. I’ve learned that people come to you for advice when you are yourself and make bold, wise choices. Being myself has made me friends with most of the people I’m friends with today.
Recently, to my friends at school, I’m known to them as the friend therapist. Mainly because they come to me with problems and I help them pick a solution. I give them advice. So in other words, I’m Dumbledore. About two days ago, before writing this speech, my closest friend need my advice. On boys. And before texting her I thought what would I know. I’ve never had a boyfriend. She’s had hands full. I agreed to give her advice. See I’m good at being a listener. Just not all the time. Anyway, she was going on a date. Go figure. Well she didn't need clothing advice, which personally, is a good call on her part. You’ve seen my fashion choices. She need my advice on if she should kiss him or not. And I was like, to myself, it's your first date. Geeze. She said he really wants to kiss her and she really wants to kiss him. She told me, I think it's too soon though. I agreed and nodded my head. I told her, “If you don’t want to kiss, then tell him how you feel. If he doesn't respect that fact then he isn't the right guy for you. Guys should respect what girls want.” that was my advice. In two short text messages. And you know what? She took my advice and said to him, “can we wait to kiss. It’s just I’ve always had this rule and would feel more comfortable waiting.” And he agreed. I was so proud. I think I cried.
Sometimes, giving the simplest advice could impact hugely on someone's life. As shown in this example. I conclude my talk with this little piece of advice from my favorite artist demi Lovato, “no matter what you’re going through, there’s a light at the end of the tunnel and it may seem hard to get to it but you can do it and just keep working towards it and you’ll find the positive side of things.”
About 10 years ago a friend of mine was looking through my medical records and discovered I had moebius syndrome. She thought it would be good for me to meet someone else who had it so she contacted Sharon and we all had lunch one Sunday afternoon. Both Sharon and Dan offered their hands in friendship to us without any questions asked. It was very cool. I’m sure though by now Sharon has learned from her mistakes. It was a nice lunch and shortly thereafter Sharon emailed me some information about others with moebius who I might want to talk to. In 2010 when I had my heart attack Sharon drove me to the hospital. She wasn’t too happy about it! Not because she had to drive, but because I left Urgent Care who wanted to immediately send me to the hospital by ambulance so that I could go home and take a shower. If I was going to meet my maker that night. I wanted to be clean. Sharon proved her friendship that night and gained my friendship and love. When I asked her if she would co host this event she said yes immediately. She was the one who came up with the great idea of having a picnic. I’m not a party planner. I was thinking everyone could eat tuna fish on Waffles! They’re really tasty!!!! On a serious note Sharon’s mom has been very sick lately and recently had surgery. Despite that she still found time to help put this together. I don’t know how long she is going to be able to stay today. So I want to thank her now and tell her that we all love her very much. Please give it up for Sharon Devenney!
In 2008 when I first got on Facebook I knew a dozen moebius families, but none of them with the exception of Sharon knew each other. So we started a long process of connecting the dots and bringing the moebius families together online. It wasn’t just me doing it. It was everyone who was involved in the many faces at the time. Donnie Downs, Brittany Rogers Hoffman, Dawn Maitland, Lisa Smant, Kay Von Willing, Gavin Fouche and others. At the time I really didn’t understand what the future impact of what we were doing would be.
I wasn’t able to go to the 2010 Moebius Syndrome Conference on the West Coast because I was recovering from heart surgery, but a bunch of people were sending me texts and photos from the conference so I felt like I was there. One lady sent me a message which said,
“Tim everyone is talking about you at the conference. We all feel like we know each other because you connected us all on Facebook. There are a lot of new people here who didn’t know anything about the conferences and wouldn’t be here if it hadn’t been for your efforts. Thankyou!”
That was a defining moment for me. I knew then we had done good. I also realized for the first time that we were a part of something very special.
The second defining moment was on January 22 2011. Two days before MSAD. The Lawrance Family from Australia were on the Kerry Anne tv show talking about themselves, Moebius Syndrome, the many faces, and moebius syndrome awareness day. That show was picked up by other networks including CNBC in America. The story spread like wildfire. Moebius Syndrome Awareness became an overnight global event. To date we have had 5 msad’s each being more successful than the next. This coming year we are sharing a joint facebook page with the msf and other moebius organizations. It’s going to be the best msad yet!!!!
Let me just say for the record that none of what we have accomplished would not have been possible if it hadn’t been for the efforts of Vicki MCCarrell and the moebuis syndrome foundation. They’ve done more for our Global Moebius Syndrome Community than any other group probably ever will. Thank You Vicki.
Our global moebius syndrome community has put their faith in Vicki and I to be two of their leaders because of efforts in support of people with moebius syndrome. I can never be the leader Vicki is, but I will always try to do my best. It’s a position I take very seriously. I use my knowledge of moebius syndrome combined by 30 plus year’s management experience and my passion for the civil rights movement to guide my way. I’m very fortunate to have the council of Rebecca Maher and Gavin Fouche. We would not have been able to do what he have done the last couple of years without them.
In 2008 we did what we could to bring the global moebius syndrome community together. In 2015 and 2016 we are going to try and bring all of the moebius syndrome groups together so we can all work on putting the pieces of the bigger picture together. I’m not proposing that we form one big group. Nothing will change none of the groups will lose their identity. The only difference is that we will all be working from the same page. In the past all of the groups have benefited from what the other has done. We just haven’t done it in a coordinated effort. For this to work we all must understand that just because a couple of organizations do more than others it doesn’t make them more important or better than other organizations. Big, small, nonprofit, or not a not a nonprofit. We all are an essential part of our global moebius syndrome community.
From this point forward whenever we meet someone new who wants to learn about moebius syndrome we are going to take the time to tell them all about moebius syndrome and the different organizations involved in it. We want everyone to see the complete picture. We are hoping once other groups see what we are doing they will follow our lead.
We’ve come up with a new photo project which will help promote awareness about the many faces and the msf. We are asking people to take pictures of their friends and family holding this picture then post them on Facebook. Please tag me in them or put them on our 2016 MSAD Facebook page. www.facebook.com/msad2016. We have copies of the photo for people here to take with them. When people share our photos they can learn about our joint facebook page and educate themselves about both groups by googling the names. Individually we are a drop of water. Together we are an ocean.
The many faces photo we are using was designed by Kevin Lockwood. It is not our new logo. We are using the moebius logo to help us spread awareness. The same way all of you do for MSAD. Rebecca Maher once told me that we really didn’t understand the impact of what we have done for the moebius community. Perhaps she is right. In that same context I sometimes wonder if the moebius syndrome foundation understands how much of an impact the symbol they created has had on the global moebius syndrome community? Everyone worldwide has adopted it as the official symbol for moebius syndrome. The many faces may have played a big hand in bringing the global moebius syndrome community together. But the symbol the moebius syndrome foundation created has been the bond that has kept us all together. I’ve never said this before, but I am very proud of them for creating it. Thank You, Vicki Mccarrell, Matthew Jaffee, Lori Thomas, Marcia Abbott, Jacob Licht, Kevin Smant, Roland Benivue, Kathleen Bogart, Natalie Abbott and the others who came before them.
Honestly! I really hope to one day use this logo as our logo. I hope every group is able to use the moebius logo as their own as we walk together towards a bright new dawn.
Enjoy the day!
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