Financial Struggle of ALS

WGBH Greater Boston 5/24/17: Financial Struggle of ALS. This summer marks three years since the Ice Bucket Challenge first swept social media – with the goal of raising money for A-L-S research. It was started by Beverly native and Boston College star athlete Pete Frates, who, at the age of 27, was diagnosed with ALS — a debilitating condition that right now has no cure.

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Day 23 of ALS Awareness Month: Attending an ALS Multidisciplinary Clinic is proven to be at least as effective as Riluzole in slowing ALS.

Day 23 of ALS Awareness Month: Attending an ALS Multidisciplinary Clinic is proven to be at least as effective as Riluzole in slowing ALS. Early studies showed 7-9 months increased survival for those seen at a multidisciplinary clinic over regular visits to a neurologist. Stephen receives his care at the largest such clinic in Massachusetts, at MGH Neurology. At one clinic visit of about 2 hours, a patient can see…

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Day 22: Since 9/11 more US vets have died from ALS than all military combat deaths

Day 22 of ALS Awareness Month: Since 9/11 more US vets have died from ALS than all military combat deaths in Iraq & Afghanistan. One of the legislative priorities for The ALS Association this year is to increase funding for ALS research at the Department of Defense, from $7.5 million to $10 million. This is why. Since 9/11/2001: There were 9,500-10,000 American veteran deaths from ALS vs. 6,817 American combat…

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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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