Keyword: 'epidermolysis bullosa' | Herald Community Newspapers

Keyword: epidermolysis bullosa

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Robbie Twible, 12, and his sister, Allison, 7, celebrated as they watched themselves on “The Ellen DeGeneres Show” on Monday.

Robbie goes on 'Ellen'

Not many people can say they’ve met all their celebrity heroes in a lifetime, let alone before they turn 13. more

By David Weingrad | 2/24/15

‘[EB] has taken his body in too many ways, but never his spirit and his soul,' said Kathy Twible, Robbie's mother.

Robbie Twible: Rising above a debilitating disease

Spend five minutes with Robbie Twible, and we challenge you not to walk away with a smile. In a brief interaction, the 12-year-old is likely to recap the latest episode of “Ellen,” play you a Justin Timberlake track on his phone, and break into a song-and-dance number from his favorite Broadway play. You’d never know that he’s in pain. more

By David Weingrad | 12/31/14

Alison and Emily Carman, sisters at W.T. Clarke Middle School, sold hot chocolate last Saturday in front of their East Meadow home to raise money to find a cure for epidermolysis bullosa. Their friend Robbie Twible, center, an eighth-grader at Clarke, has E.B. Perched atop Emily was Robbie’s 7-year-old sister, Allison.

Spreading warmth, and E.B. awareness

Sisters Emily and Alison Carman said they had long noticed Robbie Twible, an eighth-grader at W.T. Clarke Middle School who has a rare, debilitating skin disease, walking through school hallways. more

By David Weingrad | 10/22/14

Kathy and Robert Twible, with their children Robbie, 12, and Allison, 7, in the backyard of their East Meadow home.

‘If you believe, it will happen’

Every day, Robbie Twible needs his bandages changed. The 12-year- old soon-to-be eighth-grader at W.T. Clarke Middle School has epidermolysis bullosa, a rare skin disease that causes severe blistering all over his body. The bandages protect him from further scarring, and removing them is a slow, painful process, said his mother, Kathy Twible (rhymes with bible). But there’s one thing that helps distract Robbie from the pain: listening to Justin Timberlake. more

By David Weingrad | 7/23/14

Robbie Twible looks over his football, signed by former Jets Marty Lyons and Kenny Schroy.

Robbie's going to Disney World

As her son, Robert, proudly displayed his new football, Kathy Twible pumped her fists and shouted the popular phrase coined by past Super Bowl … more

Mike Caputo | 1/20/10

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