Innovation and Leadership
Here at Compassionate Care ALS, we have our slogan printed on our business cards, stating our intention: “Leading a New Vision in ALS Care Since 1998.” We refer back to our humble beginnings because it was then that Gordon Heald, his wife Betsy and I, his full-time caregivers, looked around ourselves at the sparse landscape of ALS care and agreed, there’s got to be a better way.
Gordon’s legacy directly addressed our determination when we launched the Gordon T. Heald ALS Fund almost 27 years ago. In the beginning, it was just me—what we metaphorically called “Ron’s lemonade stand”—so the innovation had to start there. I looked at myself and realized that if I truly wanted to show up for those living with ALS, to walk along with them in a healthy and meaningful manner, I had to do my own inner work, my own healing.
I began searching for avenues through which to do this and found mentors in Steven Foster and Meredith Little at the School of Lost Borders, Roshi Joan Halifax at the Upaya Zen Center, Tom Daly and Jeffrey Duvall at the Men’s Council Project. I brought what I learned into my work and named the new organization Compassionate Care ALS. That would be the heart of it—showing up with kindness and compassion, bringing calm and clarity, and taking the time to know people before making any suggestions.
Out of this mindset, new possibilities began to sprout. Most of the support groups that existed 20+ years ago, and which continue today, seemed to be missing something. Good intentions were there, but the key element that I didn’t find was deep listening. I began to host what I called gatherings, modeled more in the council way I had learned in the deserts of California. These gatherings touched people at a level that traditional support groups couldn’t reach.
I started to implement a Zen-like approach to showing up—doing so with lightness, a tuned-in awareness, a feeling of spaciousness, and no agenda—bearing witness, as it is known. This helped families living with ALS relax a little, soften the trauma, and make room for possibilities that might have seemed impossible. Interesting things began to happen. The mystery found a seat at the table. People had spiritual awakenings, experienced deep healing, and even found unexpected joy amid the chaos and suffering of ALS.
Along the way, I sought out like-minded people who recognized the value of what we were doing. One of our great allies and champions became the renowned neurologist, Dr. Merit Cudkowicz, director of the Healey ALS Clinic at Mass General Hospital. She recognized that our holistic, relational approach to the disease offered a depth of humanity to the journey that she wanted for her patients. Our partnership evolved over time, and seven years ago we launched the ALS House Call program, in which a nurse or nurse practitioner from the clinic, and one of our care liaisons, began visiting ALS families in their homes. It was like the old days when the country doctor showed up on your porch with his black bag of tools and a warm smile. You knew him and he knew you.
I continued to keep my eye out for leaders and innovators. Some years back, I also got to know Dr. Richard Bedlack, head of the ALS Clinic at Duke University. Dr. Bedlack is a very broadminded individual, who became curious about the edges of ALS research, things that seemed to make a difference but weren’t widely understood. With such wide-ranging knowledge, and in collaboration with us, we thought it would be meaningful to bring Dr. Bedlack to our community for individual consultations. To that end, we launched the Lighthouse Project in March of this year. Those that have experienced a 30-minute consultation with Dr. Bedlack have found it extraordinarily valuable.
“Through the CCALS Lighthouse Project, people living with ALS are getting answers to their questions about exercises, nutrition, equipment, and experimental treatments,” says Dr. Bedlack. “They are being empowered through education to find more options they can discuss with their own doctors and medical teams. I am very proud of the hope that this new collaboration with CCALS brings!”
- The Heald Center for ALS, which we built and opened in the summer of 2019 as a place of respite and sanctuary from the rigors of ALS. It is the only facility of its kind in the United States.
- The Honey Grief Retreat Series, which we offer at our center, providing a ritual space to process the deep losses that occur on the path of ALS.
- Our Augmentative Communication Group, which provides a range of personalized services to help those living with ALS preserve the important lifeline of communication.
- Our Monthly Gatherings on Zoom, including Men of ALS, Women of ALS, Caregiver to Caregiver, Beyond ALS, Mothers of ALS, and Sons and Daughters of ALS.
- Our Speaker Series and Educational Library, which brings innovative leaders to our community with messages of hope, healing, inspiration, and grace.
- Our Volunteer Caregiver Program, which connects our community with volunteers who have been through ALS with a loved one and can offer deep understanding and support.
- The Trauma Healing Circle with Dr. Julie Brown Yau, addressing the inherently traumatic reality of an ALS diagnosis and the lasting impact on families—even beyond the illness itself.
I could go on, but let that be enough for now.
I’m incredibly proud of our extraordinary staff of nearly 30 and all they do to serve the ALS community. Each of them, in their own way, enhances our commitment to innovation and leadership. I can say with confidence, and with deep humility and gratitude, that what we do remains unique, is followed and emulated by many other organizations, and serves those we care for and love in the best way we know how.
Blessings and love to you all,
Ron