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A 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 complete facial paralysis and can't close their eyes or show facial expressions. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders and weak upper body strength may also be present.
A People with Moebius Syndrome are of normal intelligence, although their lack of facial expression is often taken to be due to dullness or unfriendliness.It is estimated that there are only between 5,000 to 10,000 cases of Moebius syndrome worldwide. THESE VERY SAME ENFORCEMENT AGENCIES, WHO HAVE SWORN TO PROTECT AND SERVE, OUR COUNTRY, AND CITIZENS ,ARE BUT SOME, OF THE CORRUPT,GREEDY TRAITORS .ENGAGED IN THE TYRANNY AND TORTURE. A "There is no substitute for a loving, supportive family A­ whether that family is biological, or our worldwide Moebius Family. We encourage you to proudly wear purple, and do some of your own research to educate yourself and others about Moebius Syndrome. We appreciate your support and look forward to the biggest Moebius Syndrome Awareness day ever!A Click here to download a pdf copy of the press release.
Just click here to order directly from Fresh Printz, the official provider of MSAD clothing. 24th, make sure to wear your shirt with pride, telling everyone you know about Moebius and the special day honoring those with the condition. This was the day our lives were put on course -part of the same journey, with Paul Mobius as the Pilot, we the passengers.The realization that word around Moebius Syndrome has spread brings a smile upon my face.
The diagnoses were dreadful, parents were sent home without any hope, advice or information. Who could survive against these odds?What was left for parents to hold onto but Prayer, love and a Godly miracle! With the help of family, friends, and groups connected to the family, you can now raise the awareness around Moebius Syndrome. Put your talents, your compassion, your knowledge, and your experience out there in a way that can benefit others. In hindsight, any challenge or disability to me means loving that person unconditionally, so let us step up and spread the awareness.
Our appeal is simple a€“ in support of those living with Moebius Syndrome, wear purple on 24 January and share your knowledge about this disorder. 24 January is now also a day of Celebration in the Life of those living with Moebius Syndrome. Thank you to all who have made this day possible and for giving our children a new meaning to life.- Kay Von WillinghMoebius Syndrome Awareness Day (MSAD) is important to me for many reasons. Like many of the other families, we learned of a new syndrome that day that very few had ever heard of. I remember the call from my sister, Stacey, telling me Dakotah was born and that something was wrong.
Thankfully, I found the Many Faces of Moebius Syndrome and Moebius Syndrome Foundation websites. The websites have brought many families together through love, support and sharing of personal knowledge and experiences, however, with very little information available to families otherwise this day is important, and much needed, to give a voice to the syndrome and the families who live it each and every day.
My hope is that Moebius Syndrome Awareness Day will bring awareness and understanding every day. My hope is that Moebius Syndrome Awareness Day will bring awareness and understanding to those around them, and within the medical community as well.- Andrea (Sweetwood) SmithWhen I was asked what MSAD means to me. I immediately think about Caleb and all the children whom I've been introduced to through Facebook connections.
I think of my friend Tim Smith, who has been informing masses of people about Moebius Syndrome for years. MSAD 2011 meant (to me) that a common goal within the Moebius community had finally been met. The school district has moved to a biometric identification program, saying students will no longer have to use an ID card to buy lunch.A  BIOMETRICS TO TRACK YOUR KIDS!!!!!i»?i»?A TARGETED INDIVIDUALS, THE GREEDY CRIMINALS ARE NOW CONDONING THEIR TECH!
God bless!- David MoffittThe media have made a number of illnesses well known to the public such as cancer, mental health illnesses like Bipolar Disorder and Schizophrenia and that is just to name a few. Though in most cases Moebius Syndrome isn't life threatening it is still a syndrome that affects people all around the world emotionally and physically.Every day people usually have no clue what Moebius Syndrome is, so sufferers with severe facial paralysis sometimes will get looked at strangely while innocently walking down the street, going about their day.
Often teenagers in high school will get bullied because having Moebius Syndrome makes them look different from others.
This can have a serious affect on people, making them feel even more anxious about their appearance.
It is hard when others dona€™t understand the syndrome; they might assume a sufferer is moody or unfriendly by the appearance of their face when this is not the case. Most of the time it is really hard to let people in because it can be awkward breaking the ice, not knowing quite how to explain yourself to other people so that they can get a better understanding of the syndrome.
And when you do explain yourself to someone you have to explain yourself to someone else and this can be tiring.Having a Moebius Syndrome Awareness day will benefit the public so much, its not a common syndrome so putting it out there to the world will just make people with the syndromes life a little easier.
That way the world is educated and familiar with it and hopefully they will be able to recognize someone with Moebius Syndrome. Hopefully they will be able to realize that people with Moebius Syndrome and perfectly intelligent and intellectual, and that they lead normal lives.
This will also benefit Doctors who will be able to diagnose new born babies and infants quicker.Having an awareness day will also be great for people with the syndrome who are unaware that there is a Moebius Syndrome website and group on Facebook that they can go to if they need some support.
This can be a very positive experience as they can interact and meet up with others with the syndrome; this can help people feel less isolated. Finally the more people that know about the syndrome the better it will be to find what causes Moebius Syndrome as this has been yet to be discovered.- Loriana Sofia FirthI was surprised by how much Jasper got out of MSAD. As a confident, bright and outgoing kid I have always felt that he just took the condition in his stride. Whilst I believe in spreading awareness, i never realized the impact having a MSAD would have on Jasper personally.
The pride in his face from being the MFMS poster boy for the day was incredible- it dawned on me then that MSAD was important for him because it gave him the opportunity to celebrate who he is BECAUSE of Moebius syndrome not despite it.



I have always tried to ensure that Jasper never feels as though he is deficient or that he needs 'fixing', MSAD helped to consolidate this.'- Lauren BroadhurstA few months ago I was watching an old episode of ER where a young boy with Down Syndrome is brought into the emergency room.
Immediately the TV doctor makes a decision on how his patient should be treated after considering a few risk factors involved in having Down Syndrome.
It's mostly likely that if the situation were real the doctor wouldn't even know what Moebius Syndrome is, never mind knowing how to treat someone with it.
I believe not only could a Moebius Syndrome Awareness Day teach doctors how to treat those with Moebius medically, it would teach others how to treat those affected by Moebius socially as well.- Gavin FoucheThe 1st Annual Moebius Syndrome Awareness Day was an invaluable day for our family. I believe that with the HUGE effort of the entire Moebius Syndrome community, MSAD allowed us to educate countless people across the world, including our family and friends that were unaware of exactly what Zaydena€™s diagnosis meant.
Parents, relatives, friends and fellow Moebians made MSAD 2011 a huge success through their hard work and creativity. Leta€™s make January 24, 2012 known throughout the world so parents and health care providers can make informed decisions when a diagnosis of Moebius Syndrome is made.- Holly WilliamsA  What does Moebius Syndrome mean to me?
When I was younger, it was no fun to have other kids my age stare at me, or make fun of me (it's really no fun to have that happen to you as an adult either).
At the same time, having Moebius Syndrome has allowed me to get to know some wonderful people, people whom I never would have known otherwisea€”of course I speak of the Moebius Community. And I think having to overcome the obstacles that I and all of us face, has made me tougher, a bit more resilient, than I would have been otherwise. We understand achieving despite obstacles, we understand climbing mountains, striving, trying. But the entire Moebius community and what it achieves daily showsa€”life sure is worth living.- Kevin Smant___________________________________________________________________________________________________________A Please consider joining us on Facebook using the icon above. Each time we get a new "Like" we are spreading awareness about moebius syndrome one step further. As we become better known people start to see us for our commonalities not our differences. More doors are opened for us and we are able to do more towards our mission goal of "Creating a better tomorrow for ourselves and our children through education and public awareness!" We have to keep going and growing.
For Moebius Syndrome Awareness Day 2012 we reached out to other rare disease groups and told them about our Awareness Day. Essentially saying, a€?How can we help?a€?Many Rare Disease Groups have their own Awareness Days.
Moebius Syndrome Awareness Day and the Many Faces of Moebius Syndrome would not have become successful without the support and friendship of NORD, Rare Connect, The Global Genes Project, and many other Rare Disease groups around the world. The Global Genes Project will be working with local businesses schools, sports teams, places of worship, parent advocates, etc.
The jean ribbon has become a unifying symbol for hope in the RARE disease community and building awareness is easy! 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. We will continue through 2012 with the goal of connecting 7000 RARE families with 7,000 new champions for the cause. And Global Genes Project team members wish The Many Faces of Moebius Syndrome much success on your awareness day on January 24, 2012! Paul Weindling, history of medicine professor at Oxford Brookes University, describes his search for the lost victims of Nazi experiments. 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 chairman of the board at ESL a€” then proprietor of the desert wasteland in Nevada known as a€?Area 51a€? a€” was William Perry, who would be appointed secretary of defense several years later. NORD is a unique federation of voluntary health organizations dedicated to helping people with rare a€?orphana€? 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. EUCACH.ORG PanelIn a 2-hour wide-ranging Panel with Alfred Lambremont Webre on the Transhumanist Agenda, Magnus Olsson, Dr. Henning Witte, and Melanie Vritschan, three experts from the European Coalition Against Covert Harassment, revealed recent technological advances in human robotization and nano implant technologies, and an acceleration of what Melanie Vritschan characterized as a a€?global enslavement programa€?.Shift from electromagnetic to scalar wavesThese technologies have now shifted from electromagnetic wave to scalar waves and use super quantum computers in the quantum cloud to control a€?pipesa€? a reference to the brains of humans that have been taken over via DNA, via implants that can be breathed can breach the blood-brain barrier and then controlled via scalar waved on a super-grid. Eventually, such 'subvocal speech' systems could be used in spacesuits, in noisy places like airport towers to capture air-traffic controller commands, or even in traditional voice-recognition programs to increase accuracy, according to NASA scientists."What is analyzed is silent, or sub auditory, speech, such as when a person silently reads or talks to himself," said Chuck Jorgensen, a scientist whose team is developing silent, subvocal speech recognition at NASA Ames Research Center in California's Silicon Valley.
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. We numbered the columns and rows, and we could identify each letter with a pair of single-digit numbers," Jorgensen said. 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. Every story that was shared, press release posted, or pin worn was an opportunity to raise awareness and teach others. 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 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!


People in noisy conditions could use the system when privacy is needed, such as during telephone conversations on buses or trains, according to scientists."An expanded muscle-control system could help injured astronauts control machines. If an astronaut is suffering from muscle weakness due to a long stint in microgravity, the astronaut could send signals to software that would assist with landings on Mars or the Earth, for example," Jorgensen explained. August 8 2015 Official 2015 Moebius Syndrome Awareness Day Page Our 2014-2015 Moebiuis Syndrome Family Holiday HeroesGallery 2 Moebius Syndrome Awareness Day 2015 Video Gallery Smiling with our Hearts upon the World!
These are processed to remove noise, and then we process them to see useful parts of the signals to show one word from another," Jorgensen said.After the signals are amplified, computer software 'reads' the signals to recognize each word and sound. Most people with Moebius Syndrome are born with complete facial paralysis and can't close their eyes or show facial expressions.
A "There is no substitute for a loving, supportive family A­ whether that family is biological, or our worldwide Moebius Family. Our Research and Development Division has been in contact with the Federal Bureau of Prisons, the California Department of Corrections, the Texas Department of Public Safety, and the Massachusetts Department of Correction to run limited trials of the 2020 neural chip implant. We have established representatives of our interests in both management and institutional level positions within these departments.
Federal regulations do not yet permit testing of implants on prisoners, but we have entered nto contractual agreements with privatized health care professionals and specified correctional personnel to do limited testing of our products. We need, however, to expand our testing to research how effective the 2020 neural chip implant performs in those identified as the most aggressive in our society.
In California, several prisoners were identified as members of the security threat group, EME, or Mexican Mafia. They were brought to the health services unit at Pelican Bay and tranquilized with advanced sedatives developed by our Cambridge,Massachussetts laboratories. The results of implants on 8 prisoners yielded the following results: a€?Implants served as surveillance monitoring device for threat group activity. However, during that period substantial data was gathered by our research and development team which suggests that the implants exceed expected results.
One of the major concerns of Security and the R & D team was that the test subject would discover the chemial imbalance during the initial adjustment period and the test would have to be scurbbed. However, due to advanced technological developments in the sedatives administered, the 48 hour adjustment period can be attributed t prescription medication given to the test subjects after the implant procedure. One of the concerns raised by R & D was the cause of the bleeding and how to eliminate that problem.
Unexplained bleeding might cause the subject to inquire further about his "routine" visit to the infirmary or health care facility.
Security officials now know several strategies employed by the EME that facilitate the transmission of illegal drugs and weapons into their correctional facilities. I immediately think about Caleb and all the children whom I've been introduced to through Facebook connections. One intelligence officier remarked that while they cannot use the informaiton that have in a court of law that they now know who to watch and what outside "connections" they have. The prison at Soledad is now considering transferring three subjects to Vacaville wher we have ongoing implant reserach. Our technicians have promised that they can do three 2020 neural chip implants in less than an hour.
Soledad officials hope to collect information from the trio to bring a 14 month investigation into drug trafficking by correctional officers to a close. Essentially, the implants make the unsuspecting prisoner a walking-talking recorder of every event he comes into contact with. There are only five intelligence officers and the Commisoner of Corrections who actually know the full scope of the implant testing. In Massachusetts, the Department of Corrections has already entered into high level discussion about releasing certain offenders to the community with the 2020 neural chip implants.
Our people are not altogether against the idea, however, attorneys for Intelli-Connection have advised against implant technology outside strick control settings. While we have a strong lobby in the Congress and various state legislatures favoring our product, we must proceed with the utmost caution on uncontrolled use of the 2020 neural chip. If the chip were discovered in use not authorized by law and the procedure traced to us we could not endure for long the resulting publicity and liability payments.
Massachusetts officials have developed an intelligence branch from their Fugitive Task Force Squad that would do limited test runs under tight controls with the pre-release subjects. Correctons officials have dubbed these poetnetial test subjects "the insurance group." (the name derives from the concept that the 2020 implant insures compliance with the law and allows officials to detect misconduct or violations without question) A retired police detective from Charlestown, Massachusetts, now with the intelligence unit has asked us to consider using the 2020 neural chip on hard core felons suspected of bank and armored car robbery.
He stated, "Charlestown would never be the same, we'd finally know what was happening before they knew what was happening." We will continue to explore community uses of the 2020 chip, but our company rep will be attached to all law enforcement operations with an extraction crrew that can be on-site in 2 hours from anywhere at anytime.
We have an Intelli-Connection discussion group who is meeting with the Director of Security at Florence, Colorado's federal super maximum security unit.
The initial discussions with the Director have been promising and we hope to have an R & D unit at this important facilitly within the next six months. Napolitano insisted that the department was not planning on engaging in any form of ideological profiling. When I was younger, it was no fun to have other kids my age stare at me, or make fun of me (it's really no fun to have that happen to you as an adult either). If you haven't already done so please click on the image above and like our Facebook page. I will tell him face-to-face that we honor veterans at DHS and employ thousands across the department, up to and including the Deputy Secretary," Ms. Steve Buyer of Indiana, the ranking Republican on the House Committee on Veterans' Affairs, called it "inconceivable" that the Obama administration would categorize veterans as a potential threat.



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