Guest Post: ‘Those With the Most to Lose Should Be Speaking the Loudest’


By Stan Williams

Last year, I sat in the Washington, D.C., offices of my four elected Indiana representatives and saw in their eyes how my words, and the words from my wife, pierced their hearts.

Attending the National ALS Advocacy Conference left me with the unmistakable conclusion that those with the most to lose should be speaking the loudest. We must explain to our elected officials how their inaction affects people living with ALS.

Our real-life experiences of my own battle with ALS, including my wife’s challenges as my caregiver, had an impact on the Congressmen. They listened intently. Some even shed a tear or two.

My wife and I shared how unfair the 5-month waiting period for disability benefits is for someone like me, whose diagnosis is 100 percent terminal.

We shared how I participated in a clinical trial for a promising new medication. That trial was partially financed from a government grant.

And we told them that I was participating in the National ALS Registry and how important that was to everyone with ALS.

I was proud to learn that, as a result of advocacy work like this, my community has achieved great things in 2018.

We couldn't go to the Advocacy Conference this year because my strength has significantly diminished. But I urge you to seriously consider donating to The ALS Association to make sure this important work continues.

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