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Shelly Hoover

Author Educator Advocate

Author

Shelly Hoover, Ed.D.

Wife, mother, grandmother, daughter, sister, friend, educator and ALS advocate living with joy and freedom in spite of a terminal diagnosis.

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 →

Get On Board or Get Out of My Way

I'm done playing nice. I’m supposed to be dead. This is an urgent call to action. Keep reading. I need your help!  With an ALS diagnosis in 2013, I was given 2-5 years. I’m alive but being protected to death... Continue Reading →

Let me know if there’s anything you need!

This is for people who are going through a difficult time and could use the help of your community or for people who know someone who is. First, let me talk to the people who are going through a life... Continue Reading →

Life or Death

Living with ALS presents challenges and choices, ranging from how to safely get through a morning routine to deciding whether to live with mechanical ventilation or die. Shakespeare was right; To be or not to be, that is the question.... Continue Reading →

Checking In

Unpublished blog posts sit abandoned in my draft folder. One is bitter; Another begs victim hood. That is not what I want to put out into the universe. So here I sit, gazing at my keyboard, trying again. I’ll just give it to you straight.

Losing My Religion 

I was sprinkled a Methodist, confirmed a First Congregational, dunked an evangelical, and spent years in between with the Presbyterians and non-denominational folks. My life-long Christian tradition provided encouragement, comfort, community and opportunities to serve others. For this, I'm grateful.... Continue Reading →

This is Harder Than I Expected

I've been on this ALS journey for nearly five years.  That alone makes me one of the lucky ones as half of those diagnosed die within two years. And, thanks to the VA, I have access to the equipment and... Continue Reading →

The Little Things 

It felt like God gave me a gentle kiss on the forehead. This morning I was waiting for the ALS Advocacy conference to begin and in walked Chrissie, my sister from another mister. We embraced for a moment longer than... Continue Reading →

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