Want some good news for terrible times? It seems the Ice Bucket Challenge viral fundraiser for ALS research has yielded identification of a common gene amongst 15,000 ALS patients. It's still early days for this research, but it's progress: progress funded as the result of a viral phenomenon.
"Studies show that if you've served in the military -- any branch, any war, or even if you served in a time of peace -- you have a much higher risk of dying from amyotrophic lateral sclerosis, or ALS (Lou Gehrig's disease) than if you were not in the military. And no one seems to know why." [more inside]
Why the Ice Bucket Challenge is bad for you: "The ALS campaign may be a great way to raise money – but it is a horrible reason to donate it" [more inside]
A compilation of people fucking up the ice bucket challenge. (Mildly NSFW).
New York was the closest to drive to, but they’d both need to be there for the license and return for the wedding. Out, they decided. California and Washington, and the knot of northeastern states that have legalized same-sex marriage, were too far. Maryland required only one partner to come for the license. Then a 48-hour waiting period. It was an hour and 10-minute flight. This might work, they decided: A destination wedding in Baltimore.
The British Columbia Supreme Court has struck down a ban on physician-assisted suicide, in a whopping 1415-paragraph decision. [more inside]
In Canada, "Head, Shoulders, Knees and Toes" is sung to the tune of London Bridge is Falling Down, and is super depressing..
The web series Often Awesome documents the life of Tim LaFollette, who was living with amyotrophic lateral sclerosis or Lou Gherig's disease. On August 23, Tim died at the age of 31. [more inside]
According to a new study [abstract] by doctors at Boston University and the VA Medical Center, repetitive head trauma suffered by athletes is linked to the motor neuron disease CTE (chronic traumatic encephalopathy), which may have been previously misdiagnosed as ALS, a.k.a. Lou Gehrig's Disease. This result may explain the extreme prevalence of ALS-like symptoms among former athletes and people in the military and suggests that Gehrig himself may not have suffered from Lou Gehrig's Disease. [more inside]
Scientists in Israel have developed a system that allows (some, not all) people who are "locked in" to type messages by simply holding and releasing their breath. The system was also adapted to control a wheelchair, notably in a manner that can't be disrupted by jarring or bumpy terrain. [more inside]
Carla's final video blog from heaven - shown publicly for the first time at Carla Zilbersmith's funeral after her death from ALS. [more inside]
"Loss is loss, and nothing is gained by calling it by a nicer name. My nights are intriguing; but I could do without them."
"This cockroach-like existence is cumulatively intolerable even though on any given night it is perfectly manageable." Tony Judt, in the advanced stages of ALS (aka motor neurone disease) begins a series of short pieces for the New York Review of Books with a reflection on how he spends his unmoving nights.
Can an obscure disease from Guam explain the explain the appearance of neurological disorders near Marscoma Lake in New Hampshire? The only people thought to contract Lytico-Bodig were Chamorros born before 1961 and related or married to particular familes living near the village of Umatac in Guam. It was theorised that it came from eating cycad seeds, but why were there no documented cases before the 1900s, and why are there no new cases on the island today? The popular author and neurologist Oliver Sacks visited the island and has continued to study the disease. He suggests that the cause is biomagnification of a toxin produced by cyanobacteria and concentrated twice - first by the cycads, and a second time in the flesh of the fruit bats. There are no new cases, he says, because the fruit bats have been nearly hunted to extinction.
"The EyeWriter project is an ongoing collaborative research effort to empower people, who are suffering from ALS, with creative technologies." [more inside]
Scientists report a breakthrough in stem cell production: Stem cells created from ALS patient and used to make neurons. [Via]
Slow Death Captured on a Blog. Brian Hill died February 2, 2008 after living with and blogging about his experiences with Amyotrophic Lateral Sclerosis. A similar story, previously. [more inside]
3D design artist and Filmmaker, father-to-be and fan of long titles extraordinaire, Transfatty, aka Patrick O'Brien (dir. The Man With The Smallest Penis In Existence And The Electron Microscope Technician Who Loved Him, previously) will debut his new DVD, Everything Will Be Okay, or How I Learned to Trancend Form, Live in the Now and Make Love in my Electric Wheelchair, tomorrow in NYC. The DVD is clips from his forthcoming film, October 5, 1974, his ongoing personal documentary about his journey to the end with ALS.
Think you've got a problem? Then discover how you should pick your nose with a fish fork. Some guys really don't get all the luck. Not when they bleed to death from eating blueberries.