I AM AWARE

January 24 2012 2nd Annual Moebius Syndrome Awareness Day

Please join us today and help spread awareness about this rare neurological condition.

Moebius Syndrome results from the underdevelopment of the sixth and seventh cranial nerves, which control lateral eye movement and facial expression. The absence of these nerves leaves the diagnosed person unable to blink or smile. The mask-like expression is sometimes confuled with below average intelligence.

Symptoms that sometimes occur with Moebius Syndrome are: Limb abnormalities such as clubbed feet and missing fingers or toes. Chest wall abnormalities. Crossed eyes. Difficulty in breathing and/or in swallowing Corneal erosion resulting from difficulty in blinking. Children may have delayed speech due to paralysis of lips

Little more is known about this disorder than when it was first discovered in the late 1880’s, including what actually causes Moebius Syndrome. We do know that most people that have been diagnosed with Moebius Syndrome would love to share their personal stories with you. Sometimes the lack of a smile can be mistaken as a sign of unfriendliness or that the person is unapproachable, when in reality they are wearing their smiles broadly across their hearts and waiting to share their experiences.

www.manyfacesofmoebiussyndrome.com

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Special Bulletin

January 24 2012 2nd Annual Moebius Syndrome Awareness Day

What is Moebius Syndrome?

Moebius Syndrome is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side to side. Most people with Moebius syndrome are born with facial paralysis, which means they cannot close their eyes or form facial expressions. Limb and chest wall abnormalities sometimes occur with the syndrome. Most people with Moebius syndrome have normal intelligence, and others should take care not to confuse their lack of facial expression with dullness or unfriendliness. It is named for Paul Jullius Mobius, a neurologist who first described the syndrome in 1888.

www.manyfacesofmoebiussyndrome.com

click here to download this flyer



Please join us in celebrating the second annual Moebius Syndrome Awareness day to be observed worldwide on January 24, 2012.

The first ever Moebius Syndrome Awareness Day held last year was a resounding success and was celebrated on every continent, including popular social networking sites Facebook and Twitter.

January 24 is a significant date in the history of Moebius Syndrome as it is the birth date of Professor Paul Julius Mobius, the neurologist who first diagnosed the disorder in 1888.

Once again the three Moebius Syndrome organizations – The Many Faces Of Moebius Syndrome (www.manyfacesofmoebiussyndrome.com) The Moebius Syndrome Foundation (www.moebiussyndrome.com) and the Moebius Research Trust (www.moebiusresearchtrust.org) – have joined forces in full support of this worthy cause.

If you were to gather a group of adults, like myself, who have Moebius Syndrome in a room – or even parents of children who have it – you'll find that most of us would tell you tales of how we thought that we were the only ones in the world with it, how this sometimes made us stick out in society like the proverbial sore thumb, and what joy and elation we felt when we met others whose lives had also been affected by it for the very first time.

The aim of having a Moebius Syndrome Awareness day is, of course, to spread awareness about Moebius Syndrome but it is also about celebrating the lives of the parents and children, the mothers and fathers, and the brothers and sisters whose lives have been both touched and affected by it.

This year we hope to make Moebius Syndrome Awareness Day an even bigger and better success than it was last year. - we want to colonize Facebook, take-over Twitter, conquer the world and paint it purple in support of Moebius Syndrome awareness for a day!

We want the world to know what Moebius Syndrome is; we want the world to know that even though we might look different, we are exactly the same as everyone else who lives in it; we want the world to know that we have the same needs and wants, hopes and dreams as everybody else; we want the world to know that our smiles come from our hearts, but despite this laughter still comes from our mouths.

So on January 24, 2012 please wear purple, read up on Moebius Syndrome if you have never heard of it, make others aware of it, or just give someone with Moebius Syndrome a smile or a hug and tell them how special they are.

Gavin Fouche

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MOEBIUS SYNDROME

AWARENESS DAY 24^th Jan

Mimi’s story………

When I was born everyone thought things were perfect, when I was two weeks me and mummy were admitted to hospital because I couldn’t take my milk. I really struggled and got very tired easily, I had a feeding tube and lots of help, I was there a week and the docs began to realize I wasn’t an average baby, mummy had to feed me a little different from then on, months past and doctors started to ask “has mia smiled yet?”. I had never smiled for mummy n daddy but everyone knew I was a happy little girl even if I couldn’t show it like everyone else. When I was eleven months I got very poorly and had to stay in hospital again, I had pneumonia which was very scary for mummy, daddy and all my family, when I got strong enough to go home I had to be very careful because my chest was very weak and I could catch a cold or cough very easily and get poorly again, so mummy had to leave work and take me out of nursery.

At eighteen months old mummy and nana took me to see my specialists at the hospital with all the toys, they told mummy that they thought I had a condition called moebius syndrome, everyone was happy to have a name and some answers after all the tests and scans I had to have but also very scared.Over the next few years I had lots of help from doctors and therapists, me and mummy leant a few little signs to help me communicate better.

When we moved house I started at my new school, mummy was so nervous as she does worry too much ,but I loved my new school and all my teachers, they all helped me lots with little cards and signs to help me express my feelings. I have made so many lovely friends at my school and even though I may not be able to show them all that I’m happy they take me for who I am and that’s why I love my friends .We have all made some lovely friends through the internet, people just as special as me. My family have taught me that being different is special and that I can still smile,but that my smiles come from inside !!!!!

Love mimi x x

What is moebius syndrome …………

Moebius Syndrome is a rare congenital disorder which sadly to date has no cure. We believe there are only around 200 cases in the UK, so not many people have heard of this condition. Moebius syndrome effects the 6^th and 7^th cranial nerves which control facial expressions,resulting in facial paralysis . Basic functions we take for granted i.e. blinking,smiling and frowning are affected. Other things like,difficulty in swallowing and chewing,missing limbs,toes or fingers,high pallet,cleft pallet,difficulties with hearing which can result in being very sensitive to noise,crossed eyes,sensitive eyes due to not being able to blink or skint and speech impediments .In each case these characteristics can very x

Please help us raise awareness of this condition that is very close to our hearts,we appreciate all the help and support x x also please visit www.moebiusresearchtrust.org

www.manyfacesofmoebiussyndrome.com



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While supplies last we have free 2012 Moebius Syndrome Calendars we will mail out to anyone in the United States who is holding a Moebius Syndrome Awareness Day event. If interested email us at tgsmith1963@yahoo.com.

click here to download card

1. Cut four pieces of Purple yarn. The pieces should measure 24 inches in length.

2. Fold all yarn pieces in half, with the fold facing up.

3. Tie a knot where the fold is. Make sure to leave a loop.

4. Tape the loop to a table, letting the loose yarn ends dangle off the edge.

5. Take one piece of yarn and separate it from the other yarn pieces. Twist the other three yarn pieces together.

6. Place the separated yarn on top and horizontally across the other three yarn pieces. Pull the loose yarn underneath the three yarn pieces and pull over itself, form a loose knot.

7. Pull the knot tight and move up. Continue using this yarn for about a half an inch.

8. Move the loose yarn to the group of three yarn pieces once the half an inch knots are completed.

9. Take another yarn piece from the group and make this your new loose yarn piece. Repeat steps 6 and 7.

10. Alternate the yarn pieces and continue making half an inch knot rows until your braceletis at the desired length.

11. Create a knot at the bottom of the bracelet to make sure the yarn will not come loose.

12. Put the bracelet around your wrist and weave half the loose threads through the loop. Have a friend tie all the loose yarn into a bow. This is your bracelet.

There is still time to order the official moebius syndrome awareness day shirt and have them for MSAD 2012.  The cutoff day for guaranteed delevery by MSAD 2012 is January 15 2012. Shirts are available in all sizes.  Shirts will remain available for sale all month long.  To learn more Click Here!

If would like a copy of this years Moebius Syndrome Holiday Heroes Video email us at tgsmith1963@yahoo.com and we will email you back with a copy of it. To view the Moebius Syndrome Holiday Heroes Video Click Here!

Moebius Syndrome Awareness Day and World Rare Disease Day compliment each other. Both days are designed to educate and spread awareness. We encourage everyone to share information about World Rare Disease Day on January 24 2012 Moebius Syndrome Awareness Day.

RDD! Information about Rare Disease Day can be found on http://rarediseaseday.us/ for US based activities and http://www.rarediseaseday.org/ for the international site. There is a press kit available on the US site- http://rarediseaseday.us/take-action-now/press-kit/ that gives some information and FAQs about the day. On the international site you can download this year's official poster-http://www.rarediseaseday.org/article/download.


The Global Genes Project will be working with local businesses schools, sports teams, places of worship, parent advocates, etc. to join in the 'Wear that you Care' campaign of support. The jean ribbon has become a unifying symbol for hope in the RARE disease community and building awareness is easy! Wear Jeans, Help bring Kids Hope. Log on to www.globalgenesproject.orgfor more information.

The R.A.R.E. Project team members are currently building the tools for a much needed program called 'RARE Meet Up's'. We are currently looking for rare disease advocates to contact us if they are interested in participating in a 'RARE Meet Up' group in their local area. The diseases may be different, but the challenges and struggles are the same. For more information log on to www.rareproject.org.

The 7,000 Bracelets for Hope, campaign is still going strong! We will continue through 2012 with the goal of connectin 7,000 RARE families with 7,000 new champions for the cause. For more information please visit our website at www.globalgenesproject.org.







Alone we are Rare. Together we are Strong

Each year, on the last day of February (Feb. 29 in leap years and Feb. 28 in other years) the world celebrates Rare Disease Day, to promote awareness of rare diseases as a public health challenge that cannot be ignored. Rare Disease Day 2011 touched minds, hearts and souls across the nation and 2012 that momentum continues. Advocacy days, like Rare Disease and the Moebius Syndrome Awareness Day, are key components to spreading messages of awareness, advocacy, and hope both within the community and to the public.

The National Organization for Rare Disorders (NORD) is the US sponsor of Rare Disease Day. NORD is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Since 1983, NORD has worked closely with our patient organization members, which now number over 160.

Rare Disease Day was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. Now, the concept is rippling out around the world; in 2011 46 countries participated. The growth in just a few short years has been remarkable. Last year, the U.S. Senate adopted by unanimous consent a resolution designating February 28, 2011, Rare Disease Day across the U.S. Thanks to an amazing grassroots campaign, proclamations were obtained in 48 states and similar documents were obtained in the two other states.

Other successes this past year were obtaining more than 860 partners and ambassadors who represent patients and their families, patient organizations, government entities, medical or other professional societies, or companies that support the theme of the day. These individuals and organizations contributed to a media and social media blitz where stories, pictures, and videos were shared. Rare Disease Day was also an opportunity to promote the Rare Disease Congressional Caucus that will help focus attention on rare diseases and related needs, such as research. Most importantly, however, it was an opportunity to raise awareness about rare diseases. Every story that was shared, press release posted, or pin worn was an opportunity to raise awareness and teach others.

In 2012, we anticipate even more opportunities to spread the message about Rare Diseases. We will rely on the mobilizing capacity of our advocates and networks across the country as we truly cannot do it alone. NORD wishes The Many Faces of Moebius Syndrome www.manyfacesofmoebiussyndrome.com and it's partners the best of luck on your awareness day; all of us together have an opportunity to unite our voices for the common themes of awareness, education, research, and hope!

To learn more about the US initiatives supported through rare disease visit www.rarediseaseday.us or the global initiatives at www.rarediseaseday.org.

-Tai Spargo- MPA

Special Projects Coordinator

National Organization for Rare Disorders (NORD)

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Global Genes Project

In 2012, World Rare Disease Day falls on a truly RARE day, February 29. The Global Genes Project will be working with local businesses schools, sports teams, places of worship, parent advocates, etc. to join in the 'Wear that you Care' campaign of support. The jean ribbon has become a unifying symbol for hope in the RARE disease community and building awareness is easy! Wear Jeans, Help bring Kids Hope. Log on to www.globalgenesproject.org for more information on how you can get involved to build awareness for RARE disease and The Many Faces of Moebius Syndrome. It's easy and fun to make a difference for this community in need! Our goal is to have One Million supporters pledge to wear jeans on February 29 2012.

The R.A.R.E. Project team members are currently building the tools for a much needed program called 'RARE Meet Up's'. We are currently looking for rare disease advocates to contact us if they are interested in participating in a 'RARE Meet Up' group in their local area. The diseases may be different, but the challenges and struggles are the same. For more information log on to www.rareproject.org.

The 7,000 Bracelets for Hope, campaign is still going strong! We will continue through 2012 with the goal of connectin 7,000 RARE families with 7,000 new champions for the cause. For more information please visit our website at www.globalgenesproject.org.

The R.A.R.E. And Global Genes Project team members wish The Many Faces of Moebius Syndrome www.manyfacesofmoebiussyndrome.com much success on your awareness day on January 24, 2012! We look forward to joining your efforts on this day and on February 29 2012 to build awareness, educate, and unite!

-Amy Grover-

Dir, Community Development

R.A.R.E. Project

click here to download flyer