The Many Faces of Moebius Syndrome!

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The Foundation Mission

The mission of the Moebius Syndrome Foundation is to provide information and support to individuals with Moebius syndrome and their families, promote greater awareness and understanding of Moebius syndrome, and to advocate for scientific research to advance the diagnosis and treatment of Moebius syndrome and its associated conditions.

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"We're here for you. We're all in this together." 

Vicki McCarrell

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Here are some letters from people in the Moebius Syndrome Community who want to share their thoughts on the Moebius Syndrome Foudation conferences with you!

Our daughter Miriam is turning eight soon, and this summer will be our third Moebius Syndrome Conference.  Our first conference was in San Francisco in 2006, and it was a life-changing event for my wife and me (not as much for Miriam since she was only two).

Prior to the conference we had met very few people with Moebius.  There were no others in our area (a major US metropolitan area)that we were aware of, and we had only met a few parents of children with Moebius syndrome. 

We arrived early and were sitting outside the hotel as a shuttle bus from the airport arrived.  My wife and I glanced at the people getting off the shuttle and remarked to each other that one of the people getting off looked like they had Moebius.  We quickly caught ourselves and remembered that we were at a conference devoted to Moebius syndrome, and that there would be many people there who looked like Miriam.  But, that was what it was like for us in the early years of learning about Moebius syndrome.  Seeing other people with Moebius syndrome is almost unheard of for us and, I imagine, for everyone with Moebius syndrome.  

The San Francisco conference in 2006 and the New Jersey conference in 2008 were watershed events for our family, and we're sure the Denver conference in 2010 will continue this tradition.   Spending a long weekend with so many people with Moebius and their families provides so much to our family:

Community - Community is about being with others with shared concerns, and those with Moebius syndrome form a special community.  We all come from different ethnic, social, religious and other backgrounds, but we have Moebius in common.  Meeting so many others who have won the 'Moebius lottery' helps us understand what it means to be part of a unique, special community. 

Camraderie - We are fortunate to have many friends, but our Moebius friendships are unlike any others.  We share joy, pain and advice that only our Moebius friends can understand.

Education - Moebius is a complicated disorder and there is much to learn.  The education we receive at the conference from the scientific community and others living with Moebius is crucial to helping us be better parents to Miriam.

Tools and Skills - We only have eight years of experience with Moebius syndrome and we have much to learn from those who have traveled this path before us. 

The Moebius syndrome conferences provide us with community, camraderie, education and the tools and skills to be better parents.

Jacob Licht Treasurer Moebius Synrome Foundation U.S.

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Attendees are able to meet other individuals of various ages who have Moebius Syndorme. Most are from the U. S., but many come from other nations. Everyone networks, gets to know one another, enjoys the camaraderie, and learns a great deal from each other. All of us have had very similar experiences and challenges; through our interactions, we are able to share our successful approaches to these challenges and take comfort in knowing that there are many others out there with Moebius who we can turn to for support and friendship. As Leslie said, we are like a big family. Some of us have formed bonds that are extremely solid.

Let's not forget the speakers and programming being offered at our conferences. There is always something there for everyone; you will return home with newfound perspectives, knowledge and understanding surrounding Moebius, forms of treatment, etc.

Roland Bienvenu Moebius Syndrome Foundation Board Member

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Before I start talking about the conference I want to thank Vicki McCarrell the President of the Moebius Syndrome Foundation for giving me permission to create this page.  I'm really excited by it because it gives the new visitors to our site a new route to travel as they explore the World of Moebius Syndrome.

I'm looking forward to going to the conference so I can meet many unique and interesting people. I'm looking forward to participating in Kathleen Rollins psychological survey.  I'm looking forward to all the events. I'm looking forward to learning as much as i can about Moebius Syndrome and the Moebius Syndrome Community. And yes I'm looking forward to the barbeque. I will see all of you there! Right?

Tim Smith, Founder

 www.manyfacesofmoebiussyndrome.com

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Why I attend the Moebius Syndrome conferences? An adult with Moebius perspective. Five simple reasons:
1) To MEET and NETWORK
Meeting and networking with others speaks for itself. Its great to know we are not alone.
2) To SHARE and RECIEVE
Sharing our experiences, dreams, goals, successes and failures with each other gives us the ability to persevere on our own. Recieving ideas, support, knowledge and strength can give us hope for a brighter future.
3) To LEARN and TEACH
Learning by taking advantage of all the speakers, attending the sessions and soaking up loads of information thats available is helpful. Asking questions and answering questions. Teaching those new to the group, telling others what has worked for us and what has not.
4) To OBSERVE and GAIN INSIGHT
Observing others helps us to gain insight into ourselves. Having Moebius can be like looking out a window at a world of smiles, frowns and loads of facial expression, but not really being a part of it. For me, being able to see others with Moebius was more like looking into a mirror and seeing me as the world sees me.
5) To TOUCH and BE TOUCHED
Having the opportunity to touch others, to help in ways that noone else can. Touching the hearts of people and making a difference in thier lives. Allowing ourselves to be touched in ways that can be emotional, painful, joyful, heart breaking and heart warming all at the same time.
Those were five of my reasons, I am sure there are a thousand more. Even though it is not a vacation, it can be better than a vacation. We have lots of fun. Many of us who have attended conferences feel like we are a family. Just like any family, we are not all exactly alike but we share a close bond and share similiar experiences. We are all links in a chain that is only put together every two years.

Leslie Diane Dhaseleer

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- I get to see my friends who live in different parts of the country who I don't get to see very often.

- I like to keep myself educated about current research on Moebius.
- I feel like I can make a difference for new members of the community, new parents and people with Moebius just discovering the Moebius community, by sharing my experiences and my perspective.
- I honestly can't imagine not going-- I've been involved with the Moebius community since I was very young and it's a big part of my life and something important to me and my family.

Anonymous

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I attended the conference in 2008 with my mom and my son Clayton.  This was the first conference I attended and I was a bit a nervous because i did not know what to expect.  As soon as we checked into the hotel we immediately spotted other moebius families and everyone was so friendly and so eager to hear each other's stories. It was great to meet so many people that were in the same boat we were in at the time.  The speakers were amazing and it was great that there was free childcare provided so we could really listen and joy what the speakers had to say.   The talent show was probably my favorite night.. there are so many talented kids and it was fun to watch them perform! We really cannot wait to go back! This time my husband will be able to attend as well as our new baby will be going along too. We are going to make a family vacation out of it and I highly reccomend everyone and anyone to come! you won't regret it, see you in July!
Brittany Hoffman (Mother of 4 year old Clayton)

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My name is Sharon Deveney. My family consists of my husband, Dan, and our three daughters; Lauren (15 yrs), Madeline (11 yrs), and Grace (8 yrs). We have been part of the Moebius Syndrome Foundation since our daughter, Lauren, was born in Nov. 1994. We attended our very first Conference in NY in 1996. We have only missed one since that time (and could hardly stand we were missing it, but we were completing our basement and our monies had to be spent on that). The joy and opportunities that come from each Conference are both big and small. We have met incredible and wonderful people along the way and those friendships have only grown stronger over the years. We have met and talked with Physicians and therapists that have given us insight on how best to take care of Lauren and procedures that may or may not help her in the future. We always attend Dr. Ronald Zuker’s presentation on "smile surgery". Lauren had "smile surgery" in Toronto, Canada under the caring hands of Dr. Zuker when she was five years old (in January and June of 2000). Because we regularly saw him every other year at the Conferences, he was able to consult with us during that time about her surgery (other families that had never met Dr. Zuker had to travel to Canada just for a consult to see if their child was even a candidate for the surgery).

We met Kristee and Victoria Trumbo, who also lived in Virginia, and who attended (our first) the Conference with us in NY in 1994. We felt a kinship, going together, but leaving, we learned that we had just extended our family by 300 members!! What an awesome time! And each and every Conference thereafter!

We met another family, Dolly and Claire Altman, at the Conference in 1998. We learned that they were from Florence, SC. Only about one hour away from Myrtle Beach, SC, where were travelled too about three to four times per year. We have been close with the Altman’s since meeting them and our girls, Lauren and Claire (both the same age and both having the same hand anomaly), have grown up together!! We have pictures of them at McDonald’s playland when they were about four years old, coloring together as they grew older, playing on the beach together and for the past two summers, Claire has come to stay with us in Virginia for a month! It’s wonderful for them to have each other, most especially going through their teenage years right now.

There is so much work put into each and every Conference to make it the best for all of us. To gather the most recent medical information to pass along, to have the most informed therapists there to teach us ways to help our children, to make it a wonderful event for all of us. It’s something that should NOT be missed. If you have even the smallest opportunity to attend – I can promise you – absolutely 100% guarantee you – that you won’t regret it. Our Moebius children need us, but more importantly, they also need to feel that they’re not alone in this world.

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My name is Lisa Erickson. I am a librarian from Texas and I have Moebius. I have attended three conferences – Chicago , Texas and New Jersey – and all were great experiences, but attending my first conference changed my life forever. Not only was it incredibly moving and surreal to see a group of so many people with Moebius who looked so much like me, but also remarkable to meet people for the first time who did not initially question my looks and differences.

At that weekend in Illinois , I made lifelong friends. Being able to meet other Moebius adults was inspiring and carefree. Never before had I felt so relaxed with people whom I just met. People with Moebius or are close to someone with the syndrome have such a special and unique bond. It is somewhat liberating to be able to talk so freely with people who understand and relate to your most intimate feelings and emotions.

I was also incredibly encouraged by the people I met – so many adults pursuing their dreams and working towards their goals. Before going to Chicago , I had been toying with the idea of graduate school, and meeting people like Kevin Smant and Roland Bienvenu who already had advanced degrees, solidified my decision to go to library school.

It is also amazing to meet the new parents of Moebius children and their families. As an adult who has “grown up Moebius,” any reassurance I can give is just a small piece of what I can give back to the Moebius community. I am so thankful for the foundation and my Moebius family for allowing me to have these experiences.

To learn more about the 9th Moebius Syndrome Foundation Conference visit their website at

www.moebiussyndrome.com

Moebius Syndrome Awareness Day

Helping people with Moebius Syndrome & their families through networking, newsletters, & conferences

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9th Moebius Syndrome Foundation Conference

The 9th Moebius Syndrome Foundation Conference will be held Friday July 30 through Sunday August 1, 2010 in Broomfield,Colorado. The conference will be held at the Omni Interlocken Resort in Broomfield, just outside Denver

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Vicki's Story

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Roland's Story

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