Some of you may have seen these already, but if not, I wanted to pass them on so that as many people as possible can see them. First, Moebius Syndrome Awareness Day was a big hit in Australia:
"PURPLE shirts, shorts and even a cake – youngsters at a Morley-based childcare centre donned the colour to help educate others about Moebius syndrome.
Celebrating the annual international awareness day for the rare neurological disorder this week, kids at Huggy Bear Child Care got into the spirit by all things purple on Tuesday.
But the event was even more special as families got to learn a bit more about one of the centre’s children, Jack Lawrence (5), who was born with the condition.
The syndrome affects cranial nerves, leaving a person unable to move their faces or eyes laterally.
Respiratory problems, speech and swallowing disorders, visual impairments, sleep disorders and weak upper body strength may also be present.
Jack’s mother, Linda, said he had never seen his condition as a setback, but as an opportunity to show others being different does not matter.
“Jack compensates in many ways to communicate to others and express his feelings,” she said.
“It may be a simple movement of his shoulders or tilt of the head, but he lets you know he’s feeling in other ways than changing his facial expression.
“Kids his own age don’t always understand what he’s trying to say to them, as speech has always been difficult, and at times they may think he’s not responding to them. But he is, just in different ways.”
Centre assistant coordinator Jana Bartecki said one of the main priorities of centre was educating all about the “rainbow of diversity”.
Meanwhile, World Rare Disease Day will be coming up this month on February 29, 2012, and RARE is sponsoring a number of activities leading up to it to raise awareness:
"The R.A.R.E. Project and The Global Genes Project are asking rare disease patient advocacy groups to support the awareness efforts through the month of February in a variety of ways:
- Join the 1 Million for Rare™ disease awareness campaign by going to Facebook and "liking" the 1 Million for Rare™ awareness movement - http://www.facebook.com/globalgenesproject
- In addition to joining the 1 Million for Rare™ movement, supporters are asked to spread the word to their social networks and display the 1 Million For Rare™ logo on their personal websites or Facebook pages throughout the month of February 2012
- Write tweets: @GlobalGenes. Use: #1Mil4RARE
- Wear jeans and a denim ribbon on Rare Disease Day 2012 and consider holding a "jeans party" to raise money for your rare disease. Rare Disease Day denim ribbons can be obtained for your organization by contacting the R.A.R.E. Project. Tweet with: #WearThatYouCare
- Become part of the movement by contacting the R.A.R.E Project and join over 500 organizations who support awareness efforts
The R.A.R.E. Project was founded in 2009 by rare disease patient advocates to provide support for families living with rare diseases worldwide. The organization's mission emphasizes increasing rare disease awareness, public and physician education, building community through social media and funding research to find treatments for children within their lifetime.
The Global Genes Project, an initiative managed by the R.A.R.E. Project, is a global public awareness campaign designed around a denim jeans theme and a blue denim ribbon, which like the pink ribbon for breast cancer, has become the unifying symbol of hope for those touched by rare diseases.
The R.A.R.E. Project has launched a number of innovative awareness campaigns including, Hope, It's In Our Genes™, Wear That You Care™, 7,000 Bracelets of Hope™ to represent the 7,000 distinct rare diseases and unite 1 Million For Rare™. "
SUPER BOWL PICK
Okay, here it is---I pick the NY Giants to win; something like: Giants 24, Patriots 21.
These are two very good teams (obviously). I don't think there's a huge gap between them at all. These teams of course met in the Super Bowl four years ago. That one was a huge Giants' upset win over the previously unbeaten Pats. This game has a much different vibe. I think everyone realizes this time that these are two pretty evenly-matched teams. But---you gotta pick someone. To me, the Giants seem to be a tiny bit more of a complete team. They can run it, they can throw it, they can rush the passer. And what they've done in these playoffs is impressive--pulverizing a tough Atlanta team, winning decisively on the road at Green Bay, winning a tough battle in San Francisco against a hot 49er team. Nobody has more respect than I do for Tom Brady and Bill Belichick. But, I have a hunch the Giants won't be denied here. It should be a good, tough battle with the Giants pulling this one out late.
“My mother sat me down and said, ...you are beautiful to me but must know that you are beautiful for yourself. You should also be aware that true beauty is in the eye of the beholder, which means that how beautiful you are to other people is always going to be subjective to who is looking at you at that time, and since you will always be looking at yourself first, you should find your own beauty and feel good about who you are.” She went on to tell me that I needed to take the time to identify those things that I found to be beautiful about myself but also celebrate what I thought was weird or unusual because those were the special things that God had given to me that made me different from everybody else. I learned how to appreciate, embrace, and enhance those special things so that they would shine rather than be hidden...We learned to love and identify with what made us uniquely beautiful.”
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