But not all ALS charities are the same.
For example the ALS Association reported that that last year they gave $500,000 to Northeast ALS Consortium (NEALS), the largest association of ALS clinical researchers in the world. Likely, the ALS Association will give more to NEALS this year with the popularity of the Ice Bucket Challenge.
NEALS helps run clinical trials for ALS. On their website, they say that a “NEALS-affliated” trial is one where the “sponsor of the trial has contracted NEALS Coordinating Centers to help conduct the trial. A sponsor may contract NEALS to manage an entire trial or just a portion of the work.”I found a NEALS-affliated active trial on their website that clearly states it uses stem cells that originated from an electively aborted fetus. The trial is being funded by NeuralStem Inc. and the description states:
"These stem cells have been engineered from the spinal cord of a single fetus electively aborted after eight weeks of gestation. The tissue was obtained with the mother’s consent."
So who can you give your Ice Bucket Challenge money to? I know of one charity that is not focused on funding the research, but on making the lives of those with ALS better through technology and on raising awareness for the disease. Team Gleason, founded by former NFL player and ALS patient, Steve Gleason, has the following mission:
• Help provide individuals with neuromuscular diseases or injuries with leading edge technology, equipment and services.
• Create a global conversation about ALS to ultimately find solutions and an end to the disease.
• Raise public awareness toward ALS by providing and documenting extraordinary life adventures for individuals with muscular diseases or injuries.
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