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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.
Images,snapshots,and pics often capture a sentiment,a mood,a feeling,or even an idea of a person who's at the center of attention. Throughout the years,pictures has become one of the most popular ways to capture memorable moments.
Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders and weak upper body strength may also be present. And certainly,for a tantamount of consumer and shoppers you cant put a price tag on family and holiday pics. 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.
Decades after the invention of the first camera, a large number of consumers and shoppers continue to take pics, in a hgh tech fashion. Instead of the antiquated bulky cameras with huge lenses,consumers and shoppers frequently use SmartPhones and digital cameras to capture images and to take holiday pics. From family gatherings,to family picnics to traditional weddings to the holidays,consumers and shoppers often seize the opportunity at planned events and during the holidays for instance Thanksgiving and Christmas to take pictures of loved ones,family,friends and co workers. A "There is no substitute for a loving, supportive family A­ whether that family is biological, or our worldwide Moebius Family.
Since founding csaccac Inc in 2010, as Founder and President,I fill many hats including Product Tester and photographer. 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. And truthfully speaking,in the beginning I experienced some difficulty;however,after I purchased my first digital camera I began to feel comfortable and enjoy the ease of taking pics with a digital camera.
Months after I purchased my first digital camera,I set my sights on a tripod, a universal stand to hold my digital camera.
The main reason I purchased a tripod__ at the time, I wanted to create high quality self pics and group pics. Just click here to order directly from Fresh Printz, the official provider of MSAD clothing.
Eventhough, I've had my tripod for some months,I am still learning the ins and outs of both my digital camera and tripod.
24th, make sure to wear your shirt with pride, telling everyone you know about Moebius and the special day honoring those with the condition. Well,if you havent guessed or envisioned what the featured product for the month of November 2013 looks like or remotely even resembles __then as productor tester I guess I'll do the honors first__it's my tripod.
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. Eventually, I wanted to find out what the craze had been all about and the reason that consumers seemed to ofA  been trading in personal computers for Tablets,_well, at least leaving them at home. Ultimately, I placed online an order for a NookHD+ then opt to pick up the tech item from the store instead of waiting for it to be shipped to my place of residency. AA  few weeks with the NookHD+, I was hooked_eventhough, IA  wasna€™t a fan of touchscreen only.
Who could survive against these odds?What was left for parents to hold onto but Prayer, love and a Godly miracle! And in all honesty, since the beginning of the Smart Phone craze, I had insisted upon that all of my primary tech gadgets used for work, research and blogging had to be equipped with a QWERTY keyboard.
Infra Holding Limited: AIHL) a real estate company based in Noida coming up with commercial and residential real estate projects in Greater Noida and Noida. With the help of family, friends, and groups connected to the family, you can now raise the awareness around Moebius Syndrome.
However, in this particular instance,The NookHD+, again, touchscreen only, I made an exception.
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. As I continued to learn the ins and outs of my newly purchased NookHD+ , at the same time, I began to inquire about the accessories compatible with the tech gadget. 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. In doing so, I foundA  the tech item had a Stylus Pen specifically made to use with the NookHD+. 24 January is now also a day of Celebration in the Life of those living with Moebius Syndrome. Weeks later, I purchased a different kind of Stylus Pen , I noticed while standing atA  the checkout counter at Walgreens,pictured next to this article is that Stylus Pen. 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. Quite astonishing the Stylus Pen worked wellA  with both of my tech gadgets ( Smart Phone & Tablet). Like many of the other families, we learned of a new syndrome that day that very few had ever heard of. A frequent question a tantamount of consumers and shoppers find themselves entertaining especially during the holidays when manufacturers and retailers offer what they consider to be great deals and bargains.
I remember the call from my sister, Stacey, telling me Dakotah was born and that something was wrong. After giving the device a run for its money as well as a brief critique of the various apps and functions,I stated in my review of the Nook HD+ how pleased I was with the tech gadget. Thankfully, I found the Many Faces of Moebius Syndrome and Moebius Syndrome Foundation websites. Further into the critique, I also commented that I was soooo pleased with the tech gadget that I wanted to protect my investment. 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.
Based on my income and budget,I considered the purchase of the Nook HD+ to be a major purchase of the year.
My hope is that Moebius Syndrome Awareness Day will bring awareness and understanding every day.
Shortly after, I purchased the Nook HD+,I began to look at the recommended accessories for the tech gadget. 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.
Eventually, after I and my Nook HD+ survived the return and exchange 14 day trial period,I chose to protect my investment with a Nook HD+ cover. I immediately think about Caleb and all the children whom I've been introduced to through Facebook connections. As I began to search and think of different items that could be the product of the month for September,I began to heavily weigh in on August's product of the month,the Nook HD+cover. I think of my friend Tim Smith, who has been informing masses of people about Moebius Syndrome for years. Hours later,I arrived to the assertion that there's more than one way to protect your investment. MSAD 2011 meant (to me) that a common goal within the Moebius community had finally been met. With the assertion___, there's more than one way to protect your investment, I made the final choice to make Smart Phone covers as the product of the month for September. Furthermore, within the past five years,Ive purchased several Smart Phones from Virgin Mobile.
To be truthful, I've even purchased Smart Phone insurance,a good choice because a few months later my Smart Phone had an accident.
Despite all of the stuff I tried, sampled, tasted and tested during the recent months, as a result of a long review and critique besides from featuring the Smart Phone as a product of the month,I began to think of the different ways Ia€™ve used to protect my Smart Phone as an alternative product of the month.
For instance,Smart Phone insurance has been one the ways I protect my investment from unexpected accidents.


Ostensibly, there's more than one way to protect your Smart Phone from accidents such as, for example, you accidentally drop and break your Smart Phone or in some weird, odd, freak accident as you rush out the door you accidentally step on your Smart Phone or heaven forbids the same thing happens to you that happen to me, a few months ago, I dropped my Smart Phone in the toilet. Without a question, eschewing further debate, Smart Phone insurance is a great investment for consumers and shoppers who use their Smart Phone daily and for work.
Best of all, Smart Phone insurance usually saves the consumer from digging deep into their pockets. So, what about before those mishaps and accidents, if you havena€™t figured it out__ there's more than one way to protect your investment. Even though, at first, I might of skipped over protecting my investments, I am more open to the idea of investing and protecting my major purchases. 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. Here's an example of what I am talking about, I currently have several Smart Phone covers to protect my Smart Phone from breakage, moisture, and malfunctioning.
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.
Varying in price,color,size and shape, most of today's Smart Phone manufacturers and retailers offer to consumers and shoppers Smart Phone covers as an accessory. From passwords, to anti-theft apps, to screen locks and codes, there's more than one way to protect your investment. 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. Regardless of the price, and hopefully it is within your budget, a true frugal savvy shopper knows the importance of protecting their investment.
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. Above everything else,both I and my Nook HD+ survived the return and exchange process,quite remarkable,I even have the receipt to prove it. This is one of the best website where you will find all information related to properties in Greater Noida.
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.
Unlike sooo manyA  items, I ve returned and exchanged in the past,__it,meaning my Nook HD+ survived the fourteenth days as printed on the receipt. 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. A business practice that's part of Barnes and Noble store policy that allows customers fourteen days to return an item. We help you in Sale & Purchase of Residential Plots, villas, Industrial Plots, Shops, Kothies, Commercial Office space.
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.
In short,the 14th day, adhering to store policy was the final day that I couldA  actually return my Nook HD+ and get cash back. Apart from these, we deal in all sought of properties including resale of Noida Authority plots and YEIDA (Yamuna Expressway Industrial Development Authority) plots on Yamuna Express Way.
As a confident, bright and outgoing kid I have always felt that he just took the condition in his stride. We work hard for our clients and provide them all sort of information to sell their properties. Whilst I believe in spreading awareness, i never realized the impact having a MSAD would have on Jasper personally. It goes without saying ,I readA  the instructions,totally unavoidable with a new tech gadget,as well as,downloaded apps,and,uploaded wallpapers. 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. Not quite sure,on the day I purchased my Nook HD+__ifA  in fact, I would be satisfied with my purchase,I chose at the time not to purchase any kind of accessories.
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. As it turns out,I was soooo pleased with my purchase of the Nook HD+,I wanted to protect my investments. 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. It doesnt matter if you're on lunch break,on a mini vacation,at a webinar or conference,filling out an online report or having to send emails can be a hassle if you don't have a wifi connection,a Broadband device is just one of the many tech gadgets that consumers and shoppers frequently use to get an internet connection. Constantly,on the go,I wanted to have access to wifiA  while away from my place of residency. Parents, relatives, friends and fellow Moebians made MSAD 2011 a huge success through their hard work and creativity. Because,I perform an arrary task that frequently requires wifi access ,I purchased a Broadband to Go device from Virgin Mobile.
Egregiously,as a Virgin Mobile customer and fan,I live by Virgin Mobile products except in the case of Virgin Mobile wifi devices.
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?
Recently,I purchased Virgin Mobile's MiFi 2200 to conciliate my worries about not being able to access wifi home.
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. Aside from very slow internet speed,the device could only connect to one tech gadget and,the 3G USB plug n play stick broke too easily.
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.
Affordable,great to have on hand for shopping emergencies,the latest in recycling,a recyclable tote makes shopping less of a hassle. Ditching the old biodegradeable plastic bags for a recyclable tote,it's a smart move and a great investment for frugal,savvy,and environmentally conscious consumers and shoppers.Available in most local chain stores and at grocery stores,recyclable totes are becoming the better choice than leaving stores with the traditional biodegradeable plastic bag. 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. Part of a movement to get consumers and shoppers involved in recycling and to think about going green,consumers and shoppers now have the option of trading in those plastic bags for a recyclable tote.
Each time we get a new "Like" we are spreading awareness about moebius syndrome one step further.
A frequent shopper,I usually purchase a couple of recyclable totes to hold store purchases and other stuff.
Eventhough,I like having the choice to purchase a recyclable tote,I havent completely stop using biodegradeable plastic bags.
As we become better known people start to see us for our commonalities not our differences.
However,I have to point out the fact that when a consumer and shoppers purchase a recyclable tote they're not limited to using the tote only in that store,that's why they're called recyclable totes because they can be used more than once. 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.


In fact, most recycable totes last for more than a week,I should know because I still have a few leftover from the previous month. A great deal,a really good find,a price you wont find anywhere else,and the best price among competitors,I love a great sale and I love rewards for shopping. Savings and Rewards,for most consumers and shoppers,it's all about getting the best price for items purchase daily.
From household supplies to groceries,anyone who shops frequently knows consumers and shoppers love a really good sale_,the economic recession of 2008 could be the culprit. In fact,since the 2008 economic recession savings and rewards has become extremely important to American families on a budget.
For many American consumers and shoppers,the unexpected downturn of the American economy caused a disruption in their daily activies thus forcing consumer and shoppers to rethink the way they shop and how they shop.
For Moebius Syndrome Awareness Day 2012 we reached out to other rare disease groups and told them about our Awareness Day. As a frequent shopper and consumer,I am constantly looking for a great deal and sales on items I purchase regularly,mainly because I do live on a strict budget.
Admittedly,after the 2008 economic recession,I rediscovered coupons,and began clipping coupons frequently. In addition to clipping coupons,I also began to check sale ads at home and at the door of stores before shopping. Along with making a shopping list,clipping coupons at home,checking sale ads at the door and comparing prices,these days one of the best ways to save and get the best deals,I feel without a question has to be with a savings and reward card.
Essentially saying, a€?How can we help?a€?Many Rare Disease Groups have their own Awareness Days.
And speaking honestly, a savings and rewards card from your local chain store should be a consumer or shoppers BF(bestie). A must have for consumers and shoppers who seriously want to save,a savings and rewards card. 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. Throughout the years, my experience with last minute shopping in most instances was not too pleasant. Admittedly,I empathize as well as concur with consumers who express sentiments that last minute shopping makes the shopper(consumer) feel uncomfortable and forlorn with the just thought of buying a gift at the last minute. Often tight on funds to purchase a gift ahead of time,last minute shopping for an overwhelmed consumer with a limited budget could cause the consumer to be late and in some instance not to attend the event or special function. The Global Genes Project will be working with local businesses schools, sports teams, places of worship, parent advocates, etc. Subsequently, over the years, I have come to realize that last minute shopping it's not the best of fun. As a result, I definitely would not recommend last minute shopping to a consumer as a shopping tip. The jean ribbon has become a unifying symbol for hope in the RARE disease community and building awareness is easy!
Unequivocally, shopping for special events and functions such as finding an appropriate could take several visits different stores. Finding the appropriate could mean spending an entire day in a Hallmark store reading cards, it could also mean spending all day on the phone with friend or relatives discussing gift registry,preferences,stores,likes and dislike of the recipient.
Ostensibly,the older you get the adults in your life expect two things from you one not to embarrass them in public and two if you don't have a gift to bring at least show up at special functions on time. Basic Principles of Real Estate Tips before you buy a plot What is the process to get Home Loan ?
Indeed, an earnest shopper as well as a meticulous shopper knows finding the right gift or card for a special function could require hours of shopping and visiting different stores. Shopping done precipitously could result in purchasing the wrong size,color, or something way out in left field. 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.
Don't wait until the last minute to shop for a party,baby showers,bachelorette bash,birthdays,holidays ,and anniversaries avoid uncomfortableness and the feeling of being inadequate,plan the week before. On certain days, I have even shopped the day of the event that often leaves me feeling embarrassed ashamed, and guilty about my finances even worse depress. We will continue through 2012 with the goal of connecting 7000 RARE families with 7,000 new champions for the cause. Incontrovertibly,last minute shopping in many instances could causes the consumer to become distraught,exasperated, and disconcerted not surprisingly all the emotions take away from the planned day.
What's more important being punctilious for the planned event or arriving with a hand picked gift for the recipient or recipients? Ultimately,the answer remains with the shopper (consumer) The answer should be non bias and based on the event as well as the recipient and not the shoppers wallet .
And Global Genes Project team members wish The Many Faces of Moebius Syndrome much success on your awareness day on January 24, 2012! The meticulous consumer that normally keeps track of birthdays, holidays,and anniversaries with calendars,through emails,P DA's ,Smart phones and other tech savvy gadgets of courses would not necessarily share the same feelings of a last minute shopper .
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. Search Real Estate in Greater Noida - Buy, Sell and Rent Best Residential Properties in Greater Noida by Real Property owners, Dealers, Builders and Real Estate Agents. 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. 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.
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! 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! 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. I immediately think about Caleb and all the children whom I've been introduced to through Facebook connections.
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.



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