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Meeting Hunter

As CdLS Awareness Day approaches on May 10, 2014, Brenda shares this story to help us keep in mind that even the smallest voices and the shortest interactions can have a big impact on other people's lives, and hearts. Hunter is a young boy with a rare form of a more well known genetic disorder. I met him at a Rare Disease Day event in Hartford, CT, in late February. He was in a special...

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To the Me of Ten Years Ago

By: Phoebe Holmes - Herding Cats Blog"You...yes you, holding that sweet baby girl in the plaid dress.  Let's chat.You don't know it yet, but that sweet baby girl has a secret.  One that will slowly and not completely reveal itself over the next few years.It's going to break your heart.  Repeatedly.But I promise you, it will be okay.No.  Really.Sure, you'll need therapy.  And you'll get a bottle of Prozac with that therapy.  It'll help.  It...

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Share Your Experience in Advocacy

"Genetic Alliance is partnering with Parent to Parent USA (P2P) and Family Voices (FV) to collect resources that will support individuals who wish to act as advocates on behalf of themselves, their families, or others living with the same condition. The tools will be part of an accessible online toolkit, with advocacy resources grouped by topic area.   They would like to include a personal story that demonstrates the importance of advocacy from an individual,...

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Disability Awareness Essay Contest - Ends Oct. 31

New England Disability Awareness Essay Contest! In an effort to encourage disability awareness among children, Social Security Disability Help is hosting its first ever New England Disability Awareness Essay Contest, open to students grades two through six.  Students should submit an essay describing how someone with a disability has inspired them. "We believe that by reflecting on those with disabilities, children and their families will develop a more understanding and respectful attitude toward those with...

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