Ron's Blog

I get asked by people all of the time, “Ron, what is it that you do?” It’s a big question. Difficult to capture in a few sentences, but two words sum it up: a lot! I experienced this wondering about our work throughout the construction of our new education and retreat center. Contractors and subcontractors…

Over the course of 20 years doing this work, I continue to be reminded how very important language is. The words we choose to say and when and how we say them make a tremendous impact. When used appropriately, words, ideas and information can be illuminating, comforting and freeing. When used carelessly, or from a…

Twenty years of service…just sitting with those thoughts and words fill my eyes with gentle tears. Remembering in this moment the enormous number of families we have served, the circumstances I have witnessed and the stories they have shared, is a bit staggering. As I was about to speak at our recent gala I scanned…

Through this past summer and into fall life at Compassionate Care ALS has exceeded my wildest expectations. New families continue finding their way to us and soon we’ll begin the search to hire new staff to keep up with the need. In this newsletter you will read about the many different programmatic and fundraising happenings,…

20 years ago Spring 1997… I remember it almost like yesterday… Little did I know the choices I’d soon make would lead me to discover the work that was before me. Some may call it fate. It was twenty years ago I tended to and cared for Gordon Heald. A man who with his wife…

I am constantly reminded of the strength of our CCALS community, and the opportunities that result directly from our relationships with families. I am pleased to announce the opening of our new office in Boston which came about as a direct contribution from members of our community. This space will allow us to meet locally…

As I sit here contemplating what the last year has brought to CCALS, I am amazed at what has happened. It is beyond my wildest imagination. We have added new staff members who allow us to meet the needs of the continually growing number of families requesting our services, we have developed partnerships with major…

I awoke the morning of October 9 to the news that CCALS friend Rob Millisor had died. Rob, husband and father, was in Nepal on a philanthropic mission with Doctors of the World. As I understand it, they were hiking, Rob felt ill, sat down and in moments died, “Gone Beyond.” We knew Rob through…

Here we go again! Lots of conversation, lots of activism and unfortunately lots of disagreement about whether GM 604 should be made available to those living with ALS today. Keep in mind I don’t specialize in research, I am not a scientist nor a doctor. My knowledge and expertise is on tending to those living…

From reading this newsletter you will get a glimpse at how much has been going on at Compassionate Care ALS this spring and summer. My many thoughts may be disparate but they are all relevant to the work we are doing and the assistance we bring to those living with ALS. Many positive changes are…