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The Tampa Bay Times recently produced an eight-part series about a young boy from Tampa with a rare genetic disease and his family’s stop-at-nothing efforts to seek a cure. Lincoln DeLuna suffers from X-linked myotubular myopathy, a disease that affects one in 50,000 boys. His muscles are so weak, he can barely move. Lincoln needs tubes to survive. He can’t walk, talk or swallow. He’s a smart boy who has learned to sign with his right hand, one of the few parts of his body he can control. Maggie and Anthony want their son to have a normal life. Any life, really. Without a cure, Lincoln will die. And a single shot might save him. Because Lincoln’s condition is so rare, and because boys like him aren’t supposed to live this long, the disorder is not included on Florida’s list of illnesses ( like cerebral palsy or Down syndrome) that qualify for Medicaid waivers. Federal funds help support the healthy kids program, but each state decides what diseases to cover. Science had gotten there, in just 20 years. With the help of a desperate mom in Florida, a Boston researcher growing skin, a dog from a farm in Canada, a scientist cloning genes in Seattle and a former venture capitalist creating a California company to cure ultra-rare diseases. The miracle had happened. Just not for Lincoln. “We have to just enjoy him as he is, while he’s here,” Maggie said. “He wasn’t even promised to us for a day, and he’s about to turn 5.”..They hovered over his bed, singing a goodnight song until he fell asleep. “Hey,” she called a few minutes later. “Come see this!” A French company called Dynacure had just announced a new clinical trial of a different treatment. Officials hoped to start enrolling patients in a year or two. Maybe they just had to hang on a little longer. Maggie said to Anthony, “I’m going to email them tomorrow.”

Due to his financial constraints Matt Posner, a teacher as well as an author from Queens, New York has taken the initiative to raise funds for her through Gofundme to attend the festival and workshop.

Image: NYC Silent Protest Art March at Bryant Park, 2017

The image of the Interior Minister of Germany, Horst Seehofer at the border between Austria and Germany.

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GWEN MAYSE leaned against her Honda Accord and looked around nervously with her small Yorkshire terrier tucked under her arm. She was too scared to sleep. Mayse, 59, normally sleeps in her car with her two small dogs. She lies in the driver’s seat, reclined all the way back. She parks next to her daughter’s Jeep Cherokee in a cul-de-sac of a north Sacramento business park. Half of the cul-de-sac is surrounded by barbed wire. The warehouse that used to house a city homeless shelter sits empty only feet away. As Sacramento struggles to find a solution to its growing homeless problem – opening and closing shelters, converting hotels to help the homeless, occasionally clearing out homeless encampments – a new problem confronts the county. The number of people, including families with children, living in their cars in Sacramento County has drastically increased in the last four years. Volunteers canvassing the county in January found four times the number of vehicles where people were living than they counted in 2015. Researchers estimate people were sleeping in at least 340 vehicles in the county. This included approximately 100 children. Most of the vehicles were in the city of Sacramento. The problem illustrates the complex task of reducing the homeless population in Sacramento, which has seen rents and housing prices rise dramatically even as it budgets tens of millions of dollars on shelters and support services. The city is scrambling to avoid problems like those in San Francisco, where scenes of squalor have become a symbol of the divide between the rich and the poor.

Please see video: https://vimeo.com/353631952