Raising Awareness...Activism...Advocacy... Those are just some of the words we use to demand action from anyone whether it be world leaders, industries, friends or family. Every day we engage in…
Mary Vicencia knows what it’s like to be sick as a dog. For a while, she was basically an expert in feeling downright bad. In fact, she’s a lot like…
What's the best way to raise money and awareness when you have a rare disease? Organize or participate in an event, duh. That's exactly what Dwayne Backer has been doing…
Sam Bradley hit the dystonia jackpot, but that's not a good thing. Bradley won the NCAA record for the quickest (wrestling) pin in college, and is a black belt in karate,…
If rare diseases were participating in a beauty pageant—where “beauty” means “little known,” “poorly understood,” and “damn near impossible to diagnose”—Ehlers-Danlos Syndrome (EDS) would be right up there among the…
You won’t come across too many people in your lifetimes like Elaine Gomez and her daughter, Michelle DeMont. And you probably won’t come across anyone who has died, or nearly…
10 years ago, Donna Driscoll was going about her life quite happily--she taught, was an avid tennis player, and started making plans for the future. The Connection Newspaper reports how…
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