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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 ...

  • Anything for Auni: Community rallies to help child with spinal muscular atrophy
    Auni Naulu was diagnosed earlier this year with SMA, a genetic disease, but this diagnosis has not stopped her family from seeing the good in the world.

  • Walk, children's games part of fundraiser to fight rare genetic disease
    PLANT CITY – An area nonprofit that raises money to fight a rare childhood disease will hold its biggest fundraiser of the year Nov. 15 at a Lakeland park.

  • 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.

  • 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 ...

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