You have no doubt seen a video of a friend on Facebook being doused with buckets of ice water. What would possess a human being to do something so chilling? It is the Ice Bucket Challenge to raise money and awareness for amyotrophic lateral sclerosis (ALS), often called Lou Gehrig’s Disease. ALS is a devastating, progressive neurodegenerative disease that is fatal and has no cure.
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. (read full article) Comments are closed.
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Contact your elected officials Senator Josh Hawley 212 Russell Senate Office Building Washington, D.C. 20510 202-224-6154 www.hawley.senate.gov/contact-senator-hawley Senator Eric Schmitt 260 Russell Senate Office Building Washington, DC 20510 202-224-5721 www.schmitt.senate.gov/contact/ Representative Ann Wagner 2350 Rayburn Office Building Washington, DC 20510 (202) 225-1621 wagner.house.gov/contact Washington Missouri Office 516 Jefferson Street Washington, MO 63090 (636) 231-1001 Click here to find your House Representative
April 2024
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