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Shelly Hoover

Author Educator Advocate

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March 2018

Guest Post: Patient Voices Matter

I’m grateful the National ALS Association gave me a platform to be heard.

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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Blessed Are Those Who Mourn

I’ve never known such pain as that of my broken heart, a physical presentation of indescribable grief. My ALS journey, a treatise on grief, started with the loss of cute shoes, then my career and mobility. Sometimes I threw things... Continue Reading →

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