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ALS Worldwide
October 24, 2017

On The Treatment Trail for ALS

The disease remains incurable but there are signs of hope on the horizon.

“Drug development is a long, slow process. In the meantime, many patients and their relatives and care-givers are keen to explore any avenues for help — even if the drugs concerned may not be approved for ALS in their own countries. As is the case in many incurable diseases, this desperation opens the door to many offerings of dubious merit. But one organization, ALS Worldwide, is providing help on the alternative fringe of formal clinical practice, while working with qualified medical collaborators.

The organization was established in 2008 by the parents of a young American man who died of ALS. In addition to providing guidance and support, they help to provide drugs, including medicines 
that are ‘off-label’ in at least some countries but for which they claim there 
is some evidence of benefit in ALS. These include methylcobalamin, glutathione, atropine sulfate, and a combination of dextromethorphan and quinidine marketed as Nuedexta.

“We do feel the freedom to suggest off- label use of existing medicines to try to bring symptomatic relief,” says Stephen Byer, founder and co-executive director of ALS Worldwide. He adds that some medications that the organization initially recommended when they were outside mainstream consideration are now widely prescribed or endorsed by the medical community for ALS."

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