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  • Baroness Campbell 'disappointed' by media coverage of spinal muscular atrophy in Tania Clarence case
    Baroness Campbell of Surbiton has expressed disappointment at the media coverage of spinal muscular atrophy, following the case of Tania Clarence.

  • Grade 1 student uses Skype to join the classroom
    Six-year-old Enna Lohin was born with spinal muscular atrophy, a degenerative condition that causes muscular wasting and mobility impairment. "Her muscles just keep eating the protein away and her muscles just keep wasting away, so that affects all muscles – her tongue, her respiratory, her sitting up," said Enna’s mother, Lisa Lohin. For the past three years, Enna has relied on a computer set ...

  • Isis Pharmaceuticals Reports Data From ISIS-SMN Rx Phase 2 Studies in Infants and Children With Spinal Muscular Atrophy
    CARLSBAD, Calif., Oct. 10, 2014 /PRNewswire/ -- Isis Pharmaceuticals, Inc. (ISIS) today provided an update on its ongoing open-label Phase 2 clinical studies of ISIS-SMNRx in infants and children with spinal muscular atrophy (SMA) at the 19th International World Muscle Society (WMS) Congress in Berlin, Germany. Isis is currently treating infants with SMA with ISIS-SMNRx in a Phase 3 study called ...

  • -Isis launches pivotal trial of drug for rare spine disorder
    Isis Pharmaceuticals Inc has begun enrolling infants in a pivotal Phase 3 trial of ISIS-SMNrx, an experimental treatment for spinal muscular atrophy, and it said ongoing mid-stage studies show that the drug increases muscle function in infants and children with the disease. SMA is a rare, genetic disease that causes severe muscle atrophy and weakness in newborns and children. Isis has a ...

  • N.J. family promotes genetic counseling, newborn screening after baby's dire diagnosis
    Through social media and community gatherings, the couple and their extended family are waging their own campaign to educate the public about spinal muscular atrophy. And they are calling for improvements in how parents are counseled following genetic testing, which the Silvas say should be encouraged so parents know what’s ahead for them. They'd like to see hospitals in New Jersey screen all ...

  • Isis: progress with spinal atrophy drug
    Infants with spinal muscular atrophy improved in a Phase 2 trial of an Isis Pharmaceuticals drug.

  • New home being built to help Chambersburg boy
    Travis Hartung looks out a new bedroom window Sunday with his son, Kamdyn. Kamdyn, 2, has been diagnosed with spinal muscular atrophy. He will be able to move around easier in a new, fully accessible home being built some volunteer work from the community.

  • Student with spinal muscular atrophy scores touchdown
    Teenagers can get a bad rap, but more and more, acts of kindness and gestures for classmates who face challenges are becoming more common -- and such was the case in Morris, Minnesota, on Wednesday.

  • Baby Ella loses battle with ALS-like disease
    Aurora woman had no time to work with police in an attempt to find out who was using her sick baby's photo and story to line their own pockets. Soon after this alleged fraud came to light, baby Ella, fighting an ALS-like disorder called spinal muscular atrophy, died in her mother's arms.

  • With NIH grant, Cedars-Sinai helps bring big data to neuro disease research
    ( Cedars-Sinai Medical Center ) Investigators at the Cedars-Sinai Board of Governors Regenerative Medicine Institute have received a grant from the National Institutes of Health to participate in a consortium taking the study of motor neuron disorders -- such as Lou Gehrig's disease and spinal muscular atrophy -- to a new, comprehensive perspective.

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