Sur la platine juin 2009.

Sur la platine.

 

 

Sur la platine ce mois-ci: du funk louisianais, de la cumbia colombienne, de la musique sénégalaise, du rock à papa, du dub jamaïcain, une ballade soul lascive, un hommage à Mama Africa (Miriam Makeba)…

 

A écouter sur L’Histgeobox.

Benefit concert for spinal muscular atrophy Saturday

Oakland Tribune May 18, 2011 | Eric Louie DANVILLE — Danny McHale was 6 months old when doctors diagnosed him with spinal muscular atrophy. His parents were told he probably wouldn’t live to his first birthday.

A decade later, the Danville boy is now a fifth-grader at Green Valley Elementary School. Among other interests, Danny is proud of the reigning champion San Francisco Giants and excited over the San Jose Sharks’ playoff run.

His parents and other families dealing with the disease, who on Saturday are holding their 11th annual fundraiser in hopes of finding a cure, said it’s because of children like Danny that they continue their efforts.

« If we stopped, they would think we’ve given up, » said his mom, Mary. « If you stop, the kids think there’s no hope. » The 11th annual Concert for a Cure — there will be live background music, but the event is more a dinner and auction event, with its name more a reference to its musical roots — will be held Saturday night at the Blackhawk Country Club. Tickets are $65 and available at www.concertforacure.org. go to site spinal muscular atrophy

Mary McHale said the motor neuron disease is caused by a recessive gene that is carried by one in 40 people. The likelihood of having an affected child is one in 1,600.

Spinal muscular atrophy can affect muscles — such as those for crawling, walking, head and neck control, and breathing — as well as cause pneumonia and other problems. The vast majority are diagnosed before they turn 3, though there is a type that develops as adults, McHale said.

Those with the most severe type usually die within the first two years, while others can have a normal life expectancy, according to the National Institutes of Health.

McHale said Danny’s diagnosis came during a routine checkup. He had a hard time sitting up, prompting doctors to seek tests. After the diagnosis, his parents asked what they could do. They were told to enjoy the time they had together. That’s when McHale found Families of Spinal Muscular Atrophy, a group based in Elk Grove Village, Ill.

« There’s help and there’s hope, » she said. « We couldn’t accept that he was going to die. » The concerts started soon after Danny’s diagnosis, when a member of their church they had met only once before offered to host a night of music and an auction in her backyard. The event drew about 50 people and raised $7,500. The following year, another family hosted the event. A family that attended that event learned weeks later that a daughter of their friends, Ariana Dindzans, of San Ramon, also was diagnosed and connected the two families. website spinal muscular atrophy

Since then, the McHales, Dindzans and other families have put on the yearly event, which now draws more than 200 people. Music is still part of it, though mainly in the background.

« If they know (about spinal muscular atrophy), then there can be more money, » said Ariana, 11, a fifth-grader at Walt Disney Elementary School who gets around with the help of a motorized scooter and braces on her legs. « If more money is raised, it’s faster to find a cure. » Both she and Danny have been part of experimental treatments. Danny’s care is more intense: It includes a feeding tube through his stomach and clearing his lungs twice a day. He gets around on a motorized wheelchair he controls with a small joystick. The muscles around his mouth also are affected, making it hard for someone unfamiliar to understand what he’s saying — though his family can tell.

« He’s very nice to me, » said little brother Robby, 7, to which Danny quickly replied « Sometimes. » McHale, whose group has raised about $750,000 so far for Families of Spinal Muscular Atrophy and is one of the group’s top fundraisers, said that in addition to money for research, they also want to raise awareness about the disease.

« We’d never heard of it before, » said McHale, who became more involved with the group. She is also on the nonprofit’s board of directors. « You don’t give up on kids. » Contact Eric Louie at 925-847-2123.concert for a cure– What: Benefit auction and dinner — Cost: $65– When: 6 to 11 p.m. Saturday — Where: Blackhawk Country Club, 599 Blackhawk Club Drive, Danville– Details: www.concertforacure.org Eric Louie