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Thoughts from Ron, Fall 2021 Newsletter

Over the past two plus decades, CCALS has done a lot of little things and big things in ways that truly serve the ALS community. We have done these things so well that we see the need to expand our physical presence in parts of the country where we have a connection and where it makes sense to grow. We are working hard to make sure we can do what is being asked of us.

I’ve said for a long time—and believe strongly—that what we provide to those living with ALS is unique in the world of healthcare. Our relational model is based first and foremost on the skills of listening, noticing and showing up with calm clarity. It provides something for our families they don’t often receive anywhere else. The fact that our approach works is reflected by the increasing number of families we serve.

CCALS is unique because our work can be healing. We don’t approach ALS as this relentless, merciless decline, but more like a wave, with lots of ups and downs, incredible fluidity and mystery, and many opportunities for healing, growth and joy along the way. Our team conveys this attitude beautifully with incredible presence and dexterity in the work they do every day. Every family is different, and sometimes there is significant chaos and suffering. Sometimes our best efforts are not received, and that can be frustrating. That’s why I feel it is vitally important to take good care of our staff, so they have the resiliency necessary to continue showing up for families facing such extraordinary circumstances, punctuated with a terminal illness.

A few weeks ago, all of the staff was able to take an in-person weekend together at our Retreat Center (with COVID-19 protocols in place). It was a time of community, sharing meals and stories, exploring our inner lives with open hearts, listening and appreciating who we are and what we do. I feel this effort is unique in the world of healthcare. So often, healthcare professionals at all levels are harried, stressed, and pushed to the edge of breakdown. No one is pausing to hear them, care for them or give them tools to avoid empathic distress and burnout. At CCALS we are taking the time to do this, and I believe it is making the service we provide even stronger.

Most of you who are reading this know what the road of ALS looks like. You understand that having compassionate and knowledgeable companions along the way can make a huge difference. Word of what we do and how we do it has spread, and we are answering the call. Thank you for walking along with us and supporting us every step of the way. I bow to you all.

In service,

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