3.16.18 Answer ALS


I can’t fund research because, well, I’m broke but good grief I can dang sure donate to research.

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“Answer ALS is a global project dedicated to developing and implementing a unified strategy to stop Amyotrophic Lateral Sclerosis (ALS) through an aggressively funded agenda. We achieve change through unifying our global community toward agreed upon goals in research, science, technology and education.”

Excited to officially be part of this study. I’ll go every 3 months for followup!

Reblog: Of the Earth, Love the Earth, and will return to the Earth


RIP Stephen Hawking (1942 – 1918), theoretical physicist and quick-witted man who lived with ALS for 55 years.

In the visible world, the Milky Way is a tiny fragment; within this fragment, the solar system is an infinitesimal speck, and of this speck our planet is a microscopic dot. On this dot, tiny lumps of impure carbon and water, of complicated structure, with somewhat unusual physical and chemical properties, crawl about for a few years, until they are dissolved again into the elements of which they are compounded.

Bertrand Russell

source: Astronomy Picture of the Day, September 4, 2011 In the Shadow of Saturn Image Credit: Cassini Imaging Team, SSI, JPL, ESA, NASA

Photo Explanation: In the shadow of Saturn, unexpected wonders appear. The robotic Cassini spacecraft now (2011) orbiting Saturn drifted in giant planet’s shadow for about 12 hours in 2006 and looked back toward the eclipsed Sun. Cassini…

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Reblog: Guest Post: Patient Voices Matter

The Official Blog of The ALS Association

This guest post is from Shelly Hoover, EdD, a member of the Patient & Caregiver Advisory Committee, and does not necessarily reflect the opinions of the Association staff, its Board of Trustees, or its chapters.

By guest blogger Shelly Hoover

Patient voices matter, yet the collective ALS patient community has been too patient and too quiet for too long.

The ALS Association led an unprecedented effort to develop an FDA Guidance Document for Industry. Here’s a quote from the introduction:

“In February of 2015, The ALS Association launched this effort to develop the first-ever community-driven drug development guidance for ALS with funding from the ALS Ice Bucket Challenge, bringing together over 100 participants including people living with ALS, caregivers, researchers, clinicians, and industry experts from across the world to contribute their expertise and experience. In parallel with this effort, a committee was formed to update the ALS clinical trial…

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