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The Debra M. Williams ALS Fund

Updates from Us

This was our Blog during our nearly three-year journey with ALS. If you register here, you will receive updates each time we publish a new article. We invite you to join the conversation if you would like to do so. If you prefer to communicate privately, you can do that at Contact the Debra M. Williams ALS Fund.

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Journey's End or Beginning?

Journey's End or Beginning?

Journey's End or Beginning?

“There is no despair so absolute as that which comes from the first moments of our first great sorrow, when we have not yet known what it...

Apr 14, 20226 min read

Memorial Service

We will begin the process of grieving and healing from the loss of Deb whom we love dearly in the coming weeks, and we want to provide...

Mar 14, 20221 min read

Goodbye

Goodbye

Goodbye

On Sunday, March 13, at 2:30 pm, Debra Murphy Williams departed her earthly time with us. It was a passing that was long-anticipated and,...

Mar 14, 20221 min read

Hospice

Hospice

Hospice

Bouquet sent by Abbey last week and serving as greeting point inside our home. It is with a heavy heart that I write to let you know that...

Mar 2, 20222 min read

The ALS Phenomenon

The ALS Phenomenon

The ALS Phenomenon

SPOILER ALERT: this is not a deeply personal blog post yet one that I felt should be written. The blocked punt that inspired New Orleans...

Feb 14, 20227 min read

Christmas 2021

Christmas 2021

Christmas 2021

We have just completed a torrent of activity, and it is remarkable that two months have passed since we arrived back in Yarmouth. I will...

Jan 7, 20225 min read

Deb is home

The odd-yssey that began with a trip to the emergency room on July 21 in Geneva, OH, surgery on July 22 in Cleveland, OH, and stops in...

Oct 28, 20215 min read

Triunity

Triunity

Triunity

There are many things that make up a life. We usually identify the external markers of one’s existence: education, professional...

Sep 22, 20216 min read

The Broken Places

The Broken Places

The Broken Places

A small sign that hangs by the door at MGH-Lunder 6, home to the Neurosciences Intensive Care Unit “The world breaks everyone, and after...

Aug 16, 20214 min read

Trip, Interrupted

Trip, Interrupted

Trip, Interrupted

Wanda, resting for the evening at Sheldrake Point Winery (Ovid, New York) Many of you following our journey over the past two years know...

Jul 27, 20215 min read

Playing at Control

Playing at Control

Playing at Control

A rare selfie. As ALS progresses, you notice changes in doctor visits. Things start out focused on physical assessment: what is going on...

May 17, 20216 min read

Parlez-vous SCRIBBLE?

Parlez-vous SCRIBBLE?

Parlez-vous SCRIBBLE?

As "blog denizens", you are familiar with the term Scribble and maybe even have tried it over the past few months. We are most often on...

May 4, 20212 min read

Into the trial process

Into the trial process

Into the trial process

We have not spoken in much detail about progress toward drug trials, having referenced them in our launch of this site, so I want to...

Apr 18, 20215 min read

The Color Purple

The Color Purple

The Color Purple

Looking around our home, I am drawn to the fact that purple pervades so much of our lives. We have never had a purple theme in our home,...

Apr 3, 20212 min read

Keeping Our Word(s)

Keeping Our Word(s)

Keeping Our Word(s)

Getting into our car on the cold and snowy night of December 22, 1985 following our wedding reception in New Canaan, CT. The event...

Feb 1, 20216 min read

Life on the Road

Life on the Road

Life on the Road

Last Friday, we drove to Lebanon, CT where we met up with our old and dear friends, Janet and Greg Sinnott, and began a weeklong odyssey...

Nov 7, 20202 min read

Please add your name to this petition.

https://als.quorum.us/campaign/28538/?utm_source=blog AMX0035 is a promising drug from Amylyx, and it has just completed an Open Label...

Oct 17, 20201 min read

Can we find the Circle of Trust?

Can we find the Circle of Trust?

Can we find the Circle of Trust?

The long Summer of COVID continues to grind along, taking an otherwise challenging struggle with ALS and adding an exclamation point to...

Aug 16, 20203 min read

Life from a Maine perspective

Life from a Maine perspective

Life from a Maine perspective

It has been over a month since we last posted to our blog, so I want to try and catch our friends up on our lives and do so in as...

Jul 15, 20206 min read

Happy Birthday!

Happy Birthday!

Happy Birthday!

We serenaded Deb for her Birthday yesterday. It started with a simple idea at 7:00 AM when Abbey came down to the kitchen for coffee...

May 29, 20202 min read

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Stay tuned

We will update this calendar so that friends know when we are available for a visit or get-together.

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