Day 21: 35% of pALS develop pseudobulbar affect

Day 21 of ALS Awareness Month: ~ 35% of pALS develop pseudobulbar affect, i.e. uncontrollable laughter or crying. There is one FDA approved medication to help treat pseudobulbar affect (PBA) called Nuedexta. PBA occurs in other neurological diseases in addition to ALS, such as MS and Alzheimer’s. Stephen has not developed PBA, but every few months Jane, as his caregiver, fill out a questionnaire at MGH which checks for the…

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Day 20: Hope Loves Company supports children of pALS

Day 20 of ALS Awareness Month: Hope Loves Company, Inc. is a FREE camp for children of people with ALS! We support it. #ALSAware Both of Stephen’s kids attended one of the Hope Loves Company camp weekends last summer, partially funded by the The ALS Association Massachusetts Chapter. The founder, Jodi O’Donnell-Ames, lost her husband to ALS, and afterward she wanted to make a difference in the lives of those…

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Day 19: ALS gradually kills all voluntary muscles except those controlling eye movement

Day 19 of ALS Awareness Month: ALS gradually kills all voluntary muscles except those controlling eye movement. Why? Eye movement, sometimes including blinking, almost always remains intact in those with ALS. But the eyes can fatigue quickly, which is one reason why not every pALS ends up with an expensive eye-gaze speech generating device. The ocular motor neurons appear to be resistant to ALS (also the ones controlling the bladder…

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Day 18: It costs about $2 billion to bring an ALS drug to market

Day 18 of ALS Awareness Month: The cost of bringing 1 ALS drug from lab research to clinical trials to market = about $2 billion. If an ALS drug gets pretty far down the research pipeline but then shows no improvement in a large clinical trial, that is a large investment of dollars down the drain. It’s easy to say, “Well, that’s part of the scientific process,” but it is…

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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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