On January 24th 2011 many people around the world will be doing activities to mark the 1st Annual Moebius Syndrome Awareness Day! We asked a few of our friends what their thoughts, ideas, and plans were. Here is what they had to say:
The first thought that comes to my mind is to make business cards promoting Moebius Syndrome Awareness day. I could design and print them up on my computer and hand them out when we are out and about around the city. :)
Hi I'm Georgia and on Moebius Syndrome Awareness day I'm going to prepare a very nice and colourful leaflet explaining Moebius Syndrome and highlighting the fact that people with Moebius have no difference at all from everyone else and I will go out on the street and share it to everyone with a beautiful red rose".
Some of the things we are thinking about doing include articles in the local church magazine, highlighting Moebius and the awareness day - e.g. pass it on/forward type thing! The other thing we'd thought of doing was to do a cake sale of cup cakes with the "acid" smiley face and "Moebius Syndrome Sufferers....... we smile from within" printed on rice paper discs for the top! Serena and her friends are planning to do the baking and sales in school.
We're kind of new to the community so let me introduce us. My name is Jenn. I have a 3 month old son named Zayden that was diagnosed with
Moebius Syndrome at birth. At first we were told that he may have suffered from a pediatric stroke but an MRI revealed that the 7th
cranial nerve that controls movement on the right side of his face had never formed. This is when we received our diagnosis (and not much
else as far as information goes). Zayden is able to close his eye only when he sleeps and we did not have any feeding problems, for which I
I found the Many Faces of Moebius Syndrome website through a link on Facebook and this is how we found out about Moebius Syndrome Awareness Day. We are planning on talking to the local library about having a reading hour with kids where I will read "The Red Cat" by Nancy Fabian and then explain a little bit about Moebius Syndrome and physical
differences. I am also planning on talking to the local newspaper and the local college paper to see if they will cover this event (or if
they would be willing to just run a piece on MSAD). I would also like to hand out pins with a ribbon and the Moebius Syndrome logo on them
and a little brochure on Moebius and accepting physical differences. We live in a small town so I'm not sure how many kids will be there
but I figure every person that we can educate is a person that may pass that education on to someone else. I just wish Zayden was a
little bit older so he could participate more in the discussion.
I could put a flyer all over campus with the date of Moebius Syndrome Awareness day and a brief description of what Moebius syndrome is.
We are going to ask Harrisons School Principle to speak and educate the school in Assembly and maybe hand out a leaflet of information about Moebius Syndrome to everychild in the school so they can take it home for their parents to read.
I am going to make little hearts and pass them out. Our hearts will say, "we smile with our hearts" They will also have the website address written on them. The more hearts I give out the better. Where ever I go I will show the warmth of our syndrome. My husband will pass them out at his work. We will get the word out.
i have already started by makeing my church Paster, elders and congregation aware of MSAD. On January 24th 2011 i will hopefully be wearing at T shirt with Moebius Syndrome Awareness Day on it. As a member of the town hall disability forum i am going to suggest that we support the cause...
Here's what I pledge to do: I work for a very large board of developmental disabilities. Although my colleagues are in the disability field, knowledge about Moebius Syndrome is about typical of the general population; BUT, my co-workers (therapists, service coordinators, early intervention, and so on) are in a prime position to recognize individuals who may have undiagnosed Moebius and are on the frontlines of providing treatment and support services. On Moebius Syndrome Awareness Day I will host an open house in my office...I will lure co-workers with the promise of food and "freebies" (I'm going to contact Vicki about potential leftover travel mugs from the conference and stuff each one with a Moebius brochure). When they come to my office they will find my laptop playing a powerpoint presentation I've been working on and I'll display a bunch of pictures. They can get their freebie, but they'll walk away with the important message of what Moebius is and the hope of what individuals with Moebius can achieve. Now, not everyone works with people in this field, but maybe other parents and individuals could use some of these same tricks and treat a doctor's office, school staff, or other large group of people - kind of like what drug reps do (suck up to them with food and some free pens and they'll hear your message)!
Teri Brown Godwin
I Am planning to ask my Friend who is a Morning show TV anchor at Fox 4 in Beaumont, Texas to anounce on the show that it is Moebius syndrome awareness day and have them do an informational segment, of course have them give the web information out to the public in hopes that people will visit the site and learn more about our Disorder.
Stacey Sweetwood Mitchell
What I would like to do is a benefit fundraiser for moebius called miles for smiles. I have alot of large clients that would support us in our efforts.
Jennifer Moyers Akers
I'd definitely change my profile pic like I did for craniofacial awareness.
I like the idea shared at the conference about wearing a smiley face broch, sticker, etc like people do ribbons (or I think silver is disability awareness) Grace has a bunch of smile stickers.
I am making up little bags for halloween treats and attached to each bag will be a small card with the Moebius syndrome website and plea to remember Jessica by supporting us. The kids here all know and remember Jess...and I thought this would be a simple tribute to her and great opportunity to get out the word about Moebius syndrome awareness day.
The public needs to be educated about Moebius Syndrome and how it affects individuals who have it. Make others aware by sending articles to your local newspaper or contacting local radio stations. Some libraries even have "story hour" for small children. Why not volunteer to speak to them about Moebius Syndrome? Children need to learn being physically different isn't bad, rather it can be an awesome experience.
Robbie Gartner Curtis
I have held a Health Fair at the library with about 20 different tables (Lung association, Heart & Stroke, etc), I had a Moebius Syndrome Table with pamphlets and articles and we had the school kids come down as well as people in the community. I have done presentations at the school about Moebius Syndrome as well as to 4th year nursing students at Siast (college). I also was asked to do a presentation at Cosmos Learning Centre to the caregivers of disabled people, Cassie and I did this presentation together with a slide show, explained Moebius Syndrome (they wanted this presentation 3 hours long so I went right back to the pregnancy and explained everything Cassie has been through. Sorry I am late with this but I am planning on doing something on January 24th.
I think I will contact our local newspapers and see if they want to do a story on Moebius Syndrome.
I am going to buy a yellow smiley face helium balloon and tie a note to it and when it lands, where ever, it will give the person who receives the note awareness about moebius syndrome.
Emma Jayne Turner
I am going to contact the local paper and tell them about Moebius Syndrome Awareness Day and hopefully they will do a story.
Quentin Bill Piotrowski
To spread awareness I will be showing people my Moebius Syndrome arm band. Which reminds me how precious my daughter is.
Lisa Erickson Smant
I will be passing out yellow smiley buttons to raise awareness on January 24th 2011.
On January 24th 2011 I am going to wish everyone I see a happy Moebius Syndrome Awareness Day. When they ask me what i am talking about I will give them a piece of paper with these three website addresses on them. www.moebiusresearchtrust.org www.moebiussyndrome.com www.manyfacesofmoebiussyndrome.com
While growing up my sole source of information on Moebius Syndrome was a badly photocopied page from a book, which the ophthamologist who diagnosed me at the age of 5, gave to my mother.
On days when I would feel like investigating the mystery of me I would implore my mom to take down the file which contained the family medical info from the top of her cupboard.
She would read to me from the page which was written in a thick medicalese jargon, which both of us pretended to each other to understand - but didn't! I was more fascinated however with the grainy black-and-white photo of a boy who looked just like me. For many years I used to think that the boy in the picture was me, and would ask my mom if she was absolutely sure that it WASN'T me, as I had never seen anyone quite like myself before. In the picture the boy seemed to be rolling his eyes back in his head, and try as I might, I could never manage this!
This memory from the my distant past -perhaps I shouldn't mention exactly how distant!!- sums up to me why there should be a Moebius Syndrome Awareness day, and what I should be doing on a Moebius Syndrome Awareness day.
I think because I grew up knowing virtually nothing about Moebius syndrome, I never placed much emphasis on it in my life, as to me it was always just a case of "oh well, it's just one of those things." When it did come to the harder questions associated with it like; "What do I do if a pretty girl smiles at me, and I can't smile back?" (Thankfully that never happened often!:) everyone I asked was at a loss for both words and advice, not even the page in the file back home offered up any information!
Therefore what I would like to be doing on Moebius Syndrome Awareness day is not only create awareness about Moebius syndrome, and showing people that those of us who have it share the same hopes and dreams as everyone else, but making others who have it also aware of their Moebius syndrome, and how they can live their lives to their fullest potential with it.
I believe by writing and talking about Moebius Syndrome, and our experiences with it, we can bring it out of the Dark Ages where most of the perceptions, beliefs and understanding about all rare disorders seem to originate from.
(click link to learm more)
To find out the latest on moebius syndrome awareness day and all things concerning Moebius Syndrome follow Holly Williams and us on twitter.
The 2nd Annual Moebius Syndrome Awareness Day January 24th 2012
It's never to early to start planning. We want to thank Vicki McCarrell from the Moebius Syndrome Foundation, and Dionne Read from the Moebius Research Trust, for pledging to work with us on MSAD 2012!
I wrote and posted this on myspace a few years ago. It's as true now as it was then. Here's the touched up version.
What is this all about?
It's about the future! It's about the children! It's about perception! It's about doing what is right!
My little friend Jessica has Poland's Syndrome. As things stand now chances are when she grows up some guy will ask her what's wrong with her? She'll say, "I have Poland's Syndrome." and he'll either think or say, "Is it contagious? Do I really want to be talking to this girl? What will my friends think?"
My little friend Murry has Moebius Syndrome. As things stand now chances are when he grows up some girl Will ask him what's wrong with him? He'll say "I have Moeibus Syndrome" and she'll think or say "Is it contagious? Do I really want to be talking to this boy? What will my friends think?
I don't know about you but I don't want Jessica or Murry to have to deal with things like this. They'll have enough things to worry about. They don't need any extra problems.
We can't change this overnight. But if we start today, perhaps we can change things in ten or fifteen years. We need to educate others and make them aware that those who have impairments, deformities, and disabilities are just like everyone else and they deserve to be treated with the same respect you would give a so called normal human being.
It's all about prejudice. We need someone to hate. We need someone to laugh at. We need to be able to pick on someone so we can feel better about our own lives.
We've made great progress in race relations. We've made great progress in understanding and opening our arms and hearts to the gay and lesbian community. Unfortunately we still treat people with impairments, deformities, and disabilities as third class citizens. If we use the same tools we used in strengthening race relations, and helping the gay community. We can reduce the prejudice and create a better environment for Murry, Jessica and ourselves..
Why should I care? This is a question I can't answer for you. Don't care about it. Don't think about it! Don't worry about it! But what if someday you have a child or a grandchild that is born with a deformity?. What if someday the person you love the most developes bells palsy and half of their face is paralyzed? Where will you be then? How will you feel then? What will you have already done to make their transition easier?
What is this all about? This is about Jessica, Murry, Katie, Tim, Lauren, Clayton, Matalyn, Jessie, Laura, Kari, Hannah, and YOU. Its about me doing my part in whatever small way I can to try and make things better for all of us.
Lisa's Holiday Book Picks for the young and young at heart.
(Click on book to view details at Amazon.com)
Hanukkah Mice – Kroll
Chanukah Lights Everywhere
Hanukkah Haiku – Ziefert
One Winter’s Night – Dillon
Night before Christmas – Isadora
Llama Llama Holiday Drama – Dewdney
Mouse’s first Christmas – Thompson
Christmas Crafts & Recipies
Cotton Ball Santa
What you'll need:
How to make your Cotton Ball Santa Craft
1 cup butter, softened
1 cup granulated sugar
1 large egg
1-1/2 teaspoons vanilla
3 cups all-purpose flour
1-1/4 teaspoons baking powder
Beat together butter and sugar until light and fluffy. Add egg and vanilla, mix until just combined. Add flour and baking powder in intervals. Dough will seem as if doesn't have enough moisture but continue to mix with mixer until combined (it will come together when chilled). Divide the dough into four equal parts, shape into four disks, wrap with plastic wrap and refrigerate about an hour or until firm. Preheat oven to 375 F. Lightly grease baking sheets or line with parchment paper or a non-stick baking mat. Roll out dough between 2 sheets of waxed paper, about 1/4 inch thick for crispier cookies and 1/3 inch thick for softer cookies. Cut out shapes with cookie cutters and place on prepared baking sheets. Bake for 7-8 minutes or until edges just start to turn a golden color. For softer cookies, do not allow the cookies to take on color. Remove from oven, let cool for one minute and then transfer to wire rack. Allow cookie sheet to cool thoroughly before placing uncooked dough on it. Decorate cookies with icing or Buttercream Frosting and sprinkles.
Gingerbread Men Cookies!!!!!!
1 In a large bowl, sift together flour, baking soda, and spices. Set aside.
2 In an electric mixer fitted with the paddle attachment, cream the butter. Add sugar and beat until fluffy. Mix in eggs and molasses. Gradually add the flour mixture; combine on low speed. (You may need to work it with your hands to incorporate the last bit of flour.) Divide dough in thirds; wrap each third in plastic. Chill for at least 1 hour or overnight. Before rolling out, let sit at room temperature for 5-10 minutes. If after refrigerating the dough feels too soft to roll-out, work in a little more flour.
3 Heat oven to 350°. Place a dough third on a large piece of lightly floured parchment paper or wax paper. Using a rolling pin, roll dough 1/8 inch thick. Refrigerate again for 5-10 minutes to make it easier to cut out the cookies. Use either a cookie cutter or place a stencil over the dough and use a knife to cut into desired shapes. Press raisins, chocolate chips, or candy pieces in the center of each cookie if desired for "buttons".
4 Transfer to ungreased baking sheets. Bake until crisp but not darkened, 8 to 10 minutes. Remove from oven. Let sit a few minutes and then use a metal spatula to transfer cookies to a wire rack to cool completely. Decorate as desired.
Makes 16 5-inch long cookies.
The traditional way to make Royal Icing is to beat egg whites and lemon juice together, adding the powdered sugar until the mixture holds stiff peaks. With modern concerns about salmonella from raw eggs, you can either use powdered egg whites or heat the egg whites first to kill any bacteria. With the heating method, mix the egg white and lemon juice with a third of the sugar, heat in a microwave until the mixture's temperature is 160°F. Then remove from microwave, and beat in the remaining sugar until stiff peaks form. Using the powdered egg whites method, combine 1 Tbsp egg white powder with 2 Tbsp water. Proceed as you would otherwise. (Raw egg white alternatives from the 2006 Joy of Cooking)
If the icing is too runny, add more powdered sugar until you get the desired consistency. Fill a piping bag with the icing to pipe out into different shapes. (Or use a plastic sandwich bag, with the tip of one corner of the bag cut off.) Keep the icing covered while you work with it or it will dry out.
Moebius Syndrome Blogers!!
Emily Calhoon (Moebius Mom)
(click on a name to read their blog)
A short list of some others syndromes often associated with Moebius Syndrome.
by Donnie Downs
Signs and symptoms include:
**Engaging in one-sided, long-winded conversations, without noticing if the listener is listening or trying to change the subject.
**Displaying unusual nonverbal communication, such as lack of eye contact, few facial expressions, or awkward body postures and gestures.
**Showing an intense obsession with one or two specific, narrow subjects, such as baseball statistics, train schedules, weather or snakes.
**Appearing not to understand, empathize with or be sensitive to others' feelings.
**Having a hard time "reading" other people or understanding humor.
**Speaking in a voice that is monotonous, rigid or unusually fast.
**Moving clumsily, with poor coordination.
**Having an odd posture or a rigid gait
Asperger’s Syndrome goes along with Autistic Behavior
Miller Fisher Syndrome:
A variant of the GUILLAIN-BARRE SYNDROME characterized by the acute onset of oculomotor dysfunction, ataxia, and loss of deep tendon reflexes with relative sparing of strength in the extremities and trunk. The ataxia is produced by peripheral sensory nerve dysfunction and not by cerebellar injury. Facial weakness and sensory loss may also occur. The process is mediated by autoantibodies directed against a component of myelin found in peripheral nerves.
The list of signs and symptoms for Miller Fisher Syndrome includes the 4 symptoms listed below:
**Ataxia : Failure of muscular coordination.
**Ophthalmoplegia : Paralysis or weakness of one or more of the muscles that controls the eye.
**Areflexia: The absence of muscular reflexes, or generalized muscle weakness
Guillain-Barre Syndrome often begins with weakness, tingling or loss of sensation starting in your feet and legs and spreading to your upper body and arms. These symptoms may begin — often not causing much notice — in your fingers and toes. In some people, symptoms begin in the arms or even the face. As the disorder progresses, muscle weakness can evolve into paralysis.
Signs and symptoms of Guillain-Barre syndrome may include:
**Prickling, "pins and needles" sensations in your fingers, toes or both.
**Weakness or tingling sensations in your legs that spread to your upper body.
**Unsteady walking or inability to walk.
**Difficulty with eye movement, facial movement, speaking, chewing or swallowing.
**Severe pain in your lower back.
**Difficulty with bladder control or intestinal functions.
**Very slow heart rate or low blood pressure.
Most people with Guillain-Barre syndrome experience their most significant weakness within three weeks after symptoms begin. In some cases, signs and symptoms may progress very rapidly with complete paralysis of legs, arms and breathing muscles over the course of a few hours.
(also Poland's syndrome, Poland's Syndactyly, Poland Sequence and Poland's Anomaly) Is a rare birth defect characterized by underdevelopment or absence of the chest muscle (pectoralis) on one side of the body and (but not always) webbing of the fingers (cutaneous syndactyly) of the hand on the same side (ipsilateral hand) mostly common on the right side of body and found more in males than females.
It is usually considered a unilateral condition. Some have claimed that the term can be applied in bilateral presentation, but others recommend using alternate terminology in those cases.
**Abnormal gastrointestinal tract.
**Absent pectoral muscles.
**Brachydactyly (Short fingers)
**Diaphragmatic Hernia defect.
**Liver/biliary tract anomalies.
**Rhizomelic micromelia (relatively shorter proximal segment of the limbs compared to the middle and the distal segments)
**Syndactyly of fingers. (webbing)
**Upper limb asymmetry.
**Abnormal rib dumbness.
**Simian crease on affected side.
**Agenesis Hypoplasia of the kidneys.
**Abnormal morphology of hypothalamic-hypophyseal axis.
**Abnormal function of hypothalamic-hypophyseal axis.
**Ureteric anomalies (reflux/duplex system)
**Vertebral segmentation anomaly.
Kay Von Willingh
Embracing Moebius Syndrome
By now most of us should know what Moebius Syndrome is all about, but for the newer family members, I thought it best to invite you on a wonderful journey of love, learning and discovery.
How does Moebius Syndrome change one’s life? How fearful is it for the child whilst growing up?
Through my journey with Wesley, I have learnt that parents can gather as much strength and positivity from children as what children can from their parents. Often our roles were reversed where he would lead us into action or deter us from reaction. An astounding self-discovery was his humour and whit, and since being in contact with many children and adults with Moebius Syndrome, I realized that God blessed them all with such a finely polished humour which somehow brings a bit relief to the gloom society creates around these special family members. I recall one morning in church when a few girls in our Sunday School walked in and purposefully aimed for the bench in front of us. No sooner were they settled when they turned around to stare and giggle, exchanging comments as they were probably discussing their ‘diagnoses’. Forgetting where I was, I was about to ask them to leave the church when I felt a gentle touch on my shoulder and a voice whispering in my ear: "Turn a blind eye Mom, show them we are better". After the service he uttered a roar of laughter, asking me if I had forgotten we were in church, but also questioning my reaction. Needless to say, he teased me about that day for months but also enjoying the underlined teaching he could offer.
Through him, I learnt to accept all, to embrace one another’s differences, our strength and weaknesses, but to above all, accept one another as they come into our lives. When coming across this quote, it truly brought so much meaning to our role as parents of children with special needs.
"I laugh, I love, I hope, I try, I hurt, I need, I fear, I cry. And I know you do the same things too. So we're really not that different, me and you."- Colin Raye -
How does one describe Moebius Syndrome
Prof George Psaras explains as follows:
"One of the most debilitating facial deformities is that of paralysis of the facial nerve. The seventh cranial nerve i.e. the facial is the nerve that motorizes all facial muscles except the muscle elevating the eyelid. It is therefore evident that paralysis of the facial nerve, whether complete or incomplete, leads to severe disability due to impaired articulation, inability to close the eyelids and protect the eye, drooling etc. Patients mostly complain about their facial asymmetry and unbalanced movement, especially when smiling. In cases where the paralysis is on both sides of the face the patient is highly distressed because he/she goes through life with an expressionless face and the inability to show emotions.
Paralysis of the facial nerve can be congenital (through birth), traumatic or even the result of a trivial viral infection (Bell’s palsy).
Facial paralysis in the newborn invariably leads to many unfavourable sequelae early on in life. The function of muscles vital for the protection of the eye, intelligible speech, oral continence and facial expression are lost.
The Orbicularis Oculi muscle is crucial for the adequate closure of the eyelid. It is therefore of paramount importance in protecting the cornea from drying out, by spreading an even tear film during the blinking process and also by facilitating a physical barrier against wind and dust. Another, often neglected function of the Orbicularis Oculi is the pump-like effect it has on the lacrimal sac and thus the effective clearance of tears. Patients with paralysis of the orbicularis Oculi are troubled by discomfort in the eye because of corneal exposure and dessication. Long term, this may lead to corneal ulcerations.
Other less commonly encountered syndromes are:
Poland syndrome: it includes Moebius with congenital absence of the pectoralis muscle and possible arm and hand anomalies.
Albers-Schoenberg disease: Ostopetrosis, a rare cause of paralysis at birth. May manifest later in childhood
Trisomy 18 and trisomy 13
CHARGE syndrome: Multiple cranial nerves may be involved in this condition. At least one cranial nerve is involved in 75% of cases and two or more cranial nerves are involved in 58% of cases. Of the patients who have cranial nerve involvement60% involve the VIII cranial nerve, 43% the VII and 30% involve cranial nerve IX and X. (The acronym CHARGE stands for Colobomata, Heart disease, Atresia of choanae, Retarded growth, Genital hypoplasia and Ear anomalies.)
Moebius Syndrome on its own is not life threatening but when added anomalies are present, it can complicate matters. Raising a child with special needs places an enormous financial burden on parents, but with an extra pinch of faith, love and patience, everything else seems less important.
Let’s celebrate as we continue our journey with the Moebius Flame in hand and let’s do the race side by side with our very special children and adults.