STEPHEN HAWKING’S GREATEST LESSON—A DEGENERATIVE DISEASE WON’T STOP US ACHIEVING GREATNESS

Stephen’s remembrance of Stephen Hawking featured in Newsweek 3/15/18: STEPHEN HAWKING’S GREATEST LESSON—A DEGENERATIVE DISEASE WON’T STOP US ACHIEVING GREATNESS. I am one of at least 20,000 Americans currently living with amyotrophic lateral sclerosis (ALS), just a part of the broader worldwide community mourning the passing of Stephen Hawking. His life was exceptional in many ways, just one of which was how full a life he lived for more than…

Read More

Shining a light on ALS

Boston Herald 9/5/17 Shining a light on ALS. Stephen Winthrop, a Wayland resident who was diagnosed with ALS in 2013, is chairman of the national ALS Association’s board of trustees. He spoke to the Herald’s Jack Encarnacao about the transformative effect Pete Frates and the Ice Bucket Challenge has had on public understanding of the disease.

Read More

“What Keeps Me Fighting: Living with ALS”

Loud Owl 8/30/2017: “What Keeps Me Fighting: Living with ALS”. Stephen Winthrop, a trustee on the National Board for the ALS Association, knows the adversity that come with this disease intimately. When muscle twitches began in his left arm at the beginning of the decade, Winthrop said that, “like most guys, I just ignored the twitching for a while. It wasn’t until November 2013 that I was actually diagnosed with…

Read More

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…

Read More

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…

Read More

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…

Read More

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…

Read More

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.  

Read More

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…

Read More