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Schizencephaly Awareness bracelets

mixed metals, Swarovski Crystal, all bracelets include our purple and green awareness ribbon charm $35. Breciated purple and green precious stone, bright purple and green awareness bracelet.
These are a limited time only
donation

All designs available

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Purple crystal

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Green crystal

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Bright purple and green

Bright purple and green

 


Color


Denver Nuggets and We Are R.A.R.E.

The Denver Nuggets have partnered with We Are R.A.R.E. for a fundraiser. Start spreading the word and join us at the Pepsi Center. The Denver Nuggets will be battling the Houston Rockets. This is NOT a game to MISS! Tickets are on sale through the Denver Nuggets sponsored fundraising website http://www.nuggetstix.com/wearerare. Any tickets purchased at the box office or through any other means does not count towards our fundraising efforts. Help us reach our goal to sell as many tickets as possible before March 7th.

Share with your friends, family and co-workers! Click here to download a flyer to pass around Continue reading

The Kings Head British Pub

On saturday The Pub hosted our Bikini Car Wash charity event. The Kings Head British Pub would like to say a HUGE THANK YOU to the generosity of everyone who attended the event. To all the local businesses who supported the event. To all the volunteers who worked so hard in the heat. To all the Companies who donated raffle prizes. To THE BANDS Smooth McFlea and Railz. Most of all to Noah and his family who travelled from Orlando to come and support us.
We were overwhelmed with the generosity of all the wonderful people who attended.
We not only reached our goal of ONE THOUSAND DOLLARS but overtook it!!!!!!!
Thank you all.

Noah and Danna’s fundraiser and travelling banner

The Banner sails April 25th

The Banner sails April 25th

Thursday 12-year-old Noah Dennis of Orlando will raise a banner urging awareness of schizencephaly, calling attention to a disorder that causes in utero stroke at around 5 to 7 weeks gestation. The banner is being flown by Liana’s Ransom Pirate ship Capt. Joseph Tilley, which will be docked at the Conch House in St. Augustine. From the oldest city the ship will travel to four ports to visit other families dealing with the same condition as Noah.

Final stop will be Halifax, Nova Scotia, where a second fundraiser will be celebrated for a young girl named Danna.

It was Danna’s picture that Tilley first saw and decided to help spread the word of this disorder. Noah was invited to be the one to raise the banner because of his involvement in making individuals aware of schizencephaly.

The occasion will also mark the second year of celebrating a day of awareness of the disorder.“As it stands right now Noah is one of the oldest children with Bi lateral schizencephaly,” according to his mother, Tricia Dennis. Describing her son as an “amazing little boy” and “an inspiration to so many,” Dennis notes that “as his mother, I have seen how much love and happiness he has brought to my own heart. And I have dedicated my life to carrying on his voice for every family touched with this disorder.”When he was born, she adds, she was told that Noah would not live past one day.

Dennis has started a nonprofit group for research and medical information as well as a place for parents to get help and find comfort.

May 19, 2012, Noah’s birthday, was the first Day of Awareness.

“We are overwhelmed with happiness, and we know how huge this will be as many media outlets are already following the voyage of the banner and the story” of schizencephaly, Dennis notes of the pirate ship’s role.

The story of the disorder is also being shared through Wearerare.org , a nonprofit group formed by three mothers with children of schizencephaly. It is headed by Dennis and a business partner who met Noah eight years ago “and fell in love with his story,” says Dennis.

It’s been a difficult road, Dennis wrote in a story about Noah and schizencephaly, especially since Dennis is a single mother, and accomplishing “everything we do to help others with fundraising and events, as well as meet for medical research, speaking events and counseling new families.”

 

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