Day 16: ALS advocates make an annual appeal to their Congressional representatives in Washington DC

Day 16 of ALS Awareness Month: Once a year advocates come to DC to ask their representatives in Congress to support legislation benefitting those with ALS. There were 600 of us this year, including 128 pALS! Here’s a photo of the group from Massachusetts outside U.S. Senator Elizabeth Warren‘s office, where we had a great meeting with her legislative aide, Susannah, discussing health issues and laws — things about which…

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Day 13: ALS might have 12-15 variants

Day 13 of ALS Awareness Month: ALS is so variable, scientists think there might be 12-15 types of ALS, like different types of cancer. Years ago, people might say they had “cancer.” Now we hear about many different types of cancer, including leukemia, Hodgkins Disease, lymphoma, glioblastoma, etc, all with different treatments. Similarly, researchers think there may be 15 or more different phenotypes of ALS, which explains why ALS presents…

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Day 11: Half of all ALS patients are dead 3 years from diagnosis

Day 11 of ALS Awareness Month: The biggie. Half of all patients are dead 3 years from diagnosis. 90% are dead after 10 years. 😠 This is one of the biggest facts people need to know. There is NO TIME to waste on politics, bickering, or egos. There is only time to work toward an effective treatment/cure and live as well as one can. Make no mistake: if Stephen or…

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Day 10: 90% of ALS patients choose not to have a tracheostomy

Day 10 of ALS Awareness Month: Today’s facts come from a “guest author,” a pALS named Catherine Scott. Catherine has familial ALS and has seen too many relatives succumb to the disease. She puts into words so well the horrible dilemma pALS and their families face: when one’s diaphragm and intercostal muscles no longer work and breathing is impossible on one’s own, should one have a permanent tracheostomy (often with…

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