Day 31: There is hope.

Day 31 of ALS Awareness Month: HOPE!  I give you HOPE from 3 top ALS doctors looking at the future of ALS research.   First, from Bob Brown, D. Phil., M.D., sometimes called the “Godfather of ALS research” at U.Mass. Medical School: “In only the last five years, an explosion of discoveries in the molecular biology of ALS have illuminated many targets for treatment; the pipeline with potential new ALS…

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Day 30: Keeping one’s weight up helps a pALS live longer.

Day 30 of ALS Awareness Month: Keeping one’s weight up helps a pALS live longer. Often that’s easier said than done. The night Stephen was diagnosed, we, of course, asked what we could do to improve his chances of living longer and better. His neurologist said he could gain about 15 pounds, because patients who weigh more “do better.” Similarly, pALS in the U.S. tend to live a little longer than…

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Day 29: ALS is a “differential diagnosis”

Day 29 of ALS Awareness Month: ALS is a “differential diagnosis,” i.e. the MD rules out EVERYTHING else, and then says it’s ALS. (Using male pronouns because our doc happens to be male.) When a neurologist is trying to diagnose from symptoms, he begins asking questions from a decision tree in his head. No memory problems? Rule out Alzheimer’s. Haven’t lost sensation in any part of the body? Rule out…

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Day 28: Trump wants to eliminate the National ALS Registry, but it is an important tool for scientists to learn about the causes of ALS

Day 28 of ALS Awareness Month: One way pALS can help ALS research is via the National ALS Registry. Trump wants to eliminate it. The National ALS Registry “is the only population-based registry in the U.S. that collects information to help scientists learn more about who gets ALS and its causes.”  It receives a mere $10 million from the federal budget per year but is essential for learning the epidemiology…

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Day 27: ALS has taken many famous people

Day 27 of ALS Awareness Month: ALS took: David Niven, Sen. Jacob Javits, Catfish Hunter, Gov. Paul Cellucci, & Chairman Mao (?). These are several among many famous people who have died from ALS, obviously including Lou Gehrig. Chairman Mao’s cause of death was cloaked in secrecy but is believed to have been from ALS.  

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Day 25: check out the Pete Frates Home Health Care Initiative from Massachusetts Chapter of the ALS Association

Day 25 of ALS Awareness Month: check out the Pete Frates Home Health Care Initiative from Mass Chapter of the ALS Assoc. Stephen appeared on PBS tonight with Nancy Frates to discuss the need for a 501(c)(3) home health care initiative for persons with ALS. With Radicava, patients are going to be living longer (hooray!) which will bankrupt more families who want to keep their pALS at home rather than…

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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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