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Baroness Campbell of Surbiton has expressed disappointment at the media coverage of spinal muscular atrophy, following the case of Tania Clarence.
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 ...
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 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 ...
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.
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.
Infants with spinal muscular atrophy improved in a Phase 2 trial of an Isis Pharmaceuticals drug.
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.
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.
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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