The Compassionate Care Project (CCP)

Since 1998, founder Ron Hoffman has served as Executive Director of Compassionate Care ALS (CCALS), a nonprofit whose mission is to enhance quality of life while exploring end of life for Amyotrophic Lateral Sclerosis (ALS) patients. Ron has worked with thousands of individuals, families and communities living with ALS around the world. He facilitates and guides intimate discussions for those living with the complexities of this catastrophic illness. 

Ron guides patients as they make choices and examine possibilities surrounding the disease, including the process of death and dying. Together, they create space for dialogue around decisions. Ron leads in-services and training for caregivers, hospice workers and health care professionals and is a board member of the Hospice and Palliative Care Federation of Massachusetts and a former board member of Men’s Leadership Alliance in Boulder, Colorado. Ron authored Sacred Bullet, Transforming Trauma to Grace While Tending the Terminally Ill.

The majority of healthcare practitioners lack time, tools, and training to discuss realities of disease progression and end of life options for patients and families with neurological diagnoses. CCALS supplements traditional healthcare by offering ALS patients a model of care focused on relationship-building to improve quality of life and explore end of life while living with a neurological disease. 

This person-to-person approach enhances patients' understanding of their own circumstance. Our goal in bringing this relationship model of care to other neurological diseases is to give patients the ability to make conscious, informed choices.

Our training for healthcare professionals paired with direct care services provided through CCP will greatly impact quality of life for patients with chronic and/or terminal neurological illness. Sharing our wealth of knowledge with medical professionals who work across an array of neurological diseases will transform the way health care providers respond to chronic/terminal illnesses.

More than 140,000 individuals currently live with the incurable neurological diseases CCP will address. Over $350 million is spent annually to fund research on these diseases; a comparatively minuscule amount is spent on care. Research is important in eliminating illness and slowing disease progression but those living with these diseases find a gap between scientific knowledge that medical professionals convey (symptoms and disease progression timeline) and the realities of living with the disease.

CCP’s role is to address this gap in care and education for patients, families, caregivers and healthcare professionals including hospice workers, as we have done in our work with ALS patients since 1998.  In the Conversation Starters focus group study of 736 Primary Care Physicians, fewer than one-third reported formal training on end-of-life discussion with patients/families.  A Kaiser Family Foundation study in 2015 found that “patients/ families increasingly want to talk about end-of-life care with physicians well before facing a terminal illness.”  

CCP will share knowledge about disease progression, options, end-of-life choices and respond to questions with compassion. While research is important in eliminating illness and slowing disease progression, it is critical to provide education, resources, equipment, and information to individuals and families living with these diseases.

CCP will expand CCALS services to the larger neurological disease community. This includes providing resources, equipment, increased national educational opportunities, augmentative communication, psycho-social support, trauma support, assistance navigating Medicare/Medicaid, guidance with regards to living with the disease, caregiving, and when appropriate, exploring end-of-life decisions. CCP will offer individualized support to each client and family. 

The CCALS team is well-versed in disease progression and customizing support structures for patients. CCALS is designing a training program for volunteer ALS caregivers, hospice workers and other healthcare professionals which is adaptable to all neurological diseases. ALS is not an isolated neurological disease and this project will transfer many successful interventions and techniques to other neurological diseases.  We will increase our geographic diversity and hire staff nationally and internationally, in places where we can have a lasting impact while introducing our relationship model to more families and healthcare professionals.  

Our goal is for each client to understand their individual disease experience by providing them with authentic, compassionate care. Our training aims to fundamentally change the way healthcare professionals approach working with terminal diagnoses.

CCP will expand our work with those living with ALS to support patients diagnosed with other neurological diseases including: Primary Lateral Sclerosis (PLS), Multiple System Atrophy (MSA), Huntington’s Disease and Frontotemporal Dementia (FTD).  Most of these diseases do not discriminate based on age, gender or socioeconomic status. The level of care and experience required to navigate such diseases puts individuals and families in a very vulnerable position that our present healthcare system is currently unprepared to support. 

Our model is focused on understanding the communities and individuals we serve. This occurs as we build relationships through open communication, in-depth conversations about disease progression, and discussions around end-of-life options.  CCALS staff spend hours getting to know families and ALS patients, what they want and, when appropriate, how they want to die.  By helping make peace with this transitional life stage, we bring calm, guidance and awareness to a situation that can be overwhelming.  The ALS community we serve has told us that facing one’s mortality and healing one’s trauma is the value that we bring to their lives. We listen to our community to develop a clear picture of the type of positive, holistic caregiving they need.

Over the last 23 years tending those with ALS, I have seen how our approach to care changes lives and how individuals with neurological diseases perceive their condition and future. Rather than viewing themselves as dying, we encourage individuals to see themselves as actively living with ALS. This shift in perspective opens a world of exploration and growth for those who embrace it. In addition, educating healthcare providers opens up a new dimension in their interactions with ALS patients, which is beneficial for both patient and healthcare professional.  It is imperative healthcare workers broaden their knowledge from a holistic perspective.

In the early years of Compassionate Care ALS, I was regularly approached by individuals with other neurological diseases.  These diseases did not have an organization like CCALS to support patient care. It was always my desire to reach as many individuals as possible. I believe that everyone should experience someone showing up for them when they are facing catastrophic circumstances, a mindset that stems directly from my personal life experiences.

Over our organizational lifetime, CCALS has helped as many individuals outside of the sphere of ALS as we could, but the frequent requests we receive reflect an unmet need. While writing this I received an email from someone with MSA requesting assistance.  CCALS does not have the resources to fully address other neurological diseases but we have consistently been looking for the right opportunity to expand to serve these individuals due to the commonalities of the diseases. With our exceptional staff, community relationships, and connections to major hospitals and ALS clinics, we are in the perfect position to expand to assist these individuals. The only remaining piece needed is the funding to launch this initiative, which we hope will be provided by the Elevate Prize. 

The stories I hear and the clear impact we have drives my passion for a new approach to care. I am constantly reminded of the lack of compassionate care in a system that sometimes treats patients as a burden.  A letter from an ALS family member whose husband passed recently sums up my resolve to help as many people as possible: 

“We’ve had many providers coming in and out of our home for the last four years, each one has been caring and supportive.  But one person would come with no agenda and just sit and quietly listen to us, and that was Ron. He’d listen beyond all the words, not rushing to offer advice but just listening. He was real and willing to be deeply personal and open to our suffering. He spoke with such kindness, calmness and clarity. I’d often give my husband time alone with him, and, unbeknown to me at the time, Ron helped him come to terms with this terrible illness;  he held space to hear his fears, anger and despair;  and he helped him find the courage to keep going.  He was willing to carry our heavy burden, which at times was almost unbearable.”

CCALS is an innovative organization and has grown strategically since its inception. We partner closely with ALS clinics at major institutions like Massachusetts General Hospital and Columbia Presbyterian/Columbia University Medical Center in New York.  We have a reputation among our peers as innovative leaders in the field of caregiving for ALS patients. The support we have from individual donors has sustained us and allowed us to grow to a staff of twelve, plus consultants.

Expanding to serve other neurological diseases became realistic for CCALS with the opening of our Heald Center; Education, Retreat, Sanctuary in 2018. The Heald Center campus, consisting of three buildings with three fully-accessible care suites as well as an additional seven bedrooms, serves as a place of respite for families and caregivers.  In addition, it houses the educational facilities we need to train the healthcare community.

Our staff members are well-versed in our model of relationship building, listening, creating connection, bringing calm and awareness, and the art of language around death and dying. Staff receive professional development from the most significant leaders in the field of death and dying. We have employees and consultants in Massachusetts, New York, New Hampshire, California, Colorado, South Carolina and Texas.  We have experts in Medicare/Medicaid and many years of experience in our area of expertise. We have worked with families in thirty-eight states and internationally.  We are ready for this next step.

When I began working in ALS, some healthcare professionals were resistant to my approach because I had no healthcare-related degree. What I did have was real-world experience. For nine consecutive months, I tended to three separate family members at the end of their lives. Afterwards, I worked as a personal caregiver 24/7 as a man lived and died with ALS for a year and a half.  I directly experienced receiving irrelevant information from organizations and healthcare providers that did not address patient needs. These experiences revealed to me the need to do things differently. 

One relationship with a Nurse Practitioner (NP) at an ALS clinic demonstrates the resistance I met. This individual was a great clinician but lacked bedside manner. He was not able to understand  or value the nature of my work providing compassionate care in a conscious way. He thought institutionalized medical care was enough. I persevered and provided services to our mutual patients without stepping on his toes. These patients noted the positive impact my work had on their understanding of the disease and on their outlook.  CCALS now has a formal relationship with his clinic, advising them on empathetic healthcare.

In 1997, my employer began showing symptoms of ALS. I volunteered to become his driver and his full-time caregiver.  Accompanying him through his life and death, experience with doctors, clinicians, and insurance companies, I realized a great deal was missing for ALS patients. There was a lack of compassionate, caring individuals to provide information and to facilitate dialog about the disease. My vision was to create that support structure and, at my employer’s behest, a fund was started. CCALS grew into an organization that employs twelve people and works with more than 850 ALS families annually.  

My staff and I lead by example. We drive hundreds of thousands of miles each year to visit families in their homes, where they are most comfortable. We spend hours on the phone with families, insurance companies, and doctors to ensure patients receive every aspect of care. One of my proudest achievements is the CCALS relationship with Massachusetts General Hospital (MGH), resulting in a mutual release form that allows us to share information to better serve ALS patients. We have partnered with MGH on a House Calls Program that gives homebound ALS patients of all socioeconomic situations access to medical services in the home.

CCALS exists and is successful in large part because of the financial support of people who have seen the effectiveness of our work.  Our model is to provide spiritual, emotional and physical support free of charge to anyone who needs them.  Our services include educational opportunities, Medicare/Medicaid assistance, psycho-social support, communication assistance, home assessment evaluations and support, our van program, contemplative practice, psycho-social support including developmental trauma, grief and all aspects of human development, equipment, and guidance and awareness with regards to living with ALS, caregiving, and exploring end-of-life when invited.  

We focus on providing exceptional care to all who reach out to us.  We could not do the work we do nor maintain the number of staff members we have without the support of our community, and we make sure to provide opportunities to give in every form, or to fundraise on our behalf if individuals cannot support us directly.  We receive over 4,000 donations from individuals a year which provide the bulk of our income and our fundraising is always growing. In addition, we supplement this income with grants, events and other fundraising initiatives.   Our model works because our services are so innovative and in-demand and our community recognizes the need and wants to help.

We are currently financially sustainable conducting our work with ALS patients, their families and caregivers.  We maintain this financial sustainability by cultivating our individual donors and corporate sponsors. We focus on individual fundraising within our community and most of our major donors have directly experienced the impact of our work. We inform them of the need, and their generous support allows us to provide all of our services with few exceptions at no cost to ALS patients or their families. We also regularly apply for grants that allow us to purchase more equipment and expand our resources to serve the individuals with whom we work.

Our skills in raising funds is demonstrated by our ability to complete our $3.5 million capital campaign to build the Heald Center.  In addition, due to growing demand, in November 2019 we began a campaign to raise $800,000 to expand our staff over two years and ended up raising more than $1.8 million by February 2020.  We do this in front of a backdrop of being ranked as an exceptional 4-Star charity on Guidestar meaning our organization “exceeds industry standards and outperforms most charities in its Cause.” 

 The best practices we use in our fundraising methods are easily transferable to other diseases and we anticipate they will be met with similar results.

2019 figures 

 Total board approved budget $1,409,293

Revenue raised $3,839,397

Individual Donors  44%

Grants  13%

Government funds 0%

Insurance 0%

Events 17%

Donated Goods and Services 26%

Compassionate Care ALS is a nonprofit organization, therefore we raise funds from individual donors, private foundations, corporate sponsors and other sources.  In order to sustain the growth we project by expanding to the Compassionate Care Project, we need to increase our donor base, receive more private foundation funding and expand into other areas of fundraising, including government funding.  The ability to expand our programming is contingent upon the timing of funds being committed, and the more quickly we know of funding the sooner we can implement it into programming.

We will continue on our current path and continue to grow organically until the availability of funding to allow us to expand our scope to other neurologicals.  We hope that the Elevate Prize will help make our vision a reality.

The CCALS board has budgeted $1,833,358 in expenses focusing solely on ALS patients in the year that ends 12/31/20.  As of June 30, 2020 we have raised $1,791,546.

The Elevate Prize will provide the funding and connections we need to expand the CCALS model to other neurological diseases and help us further educate healthcare professionals across the country and the world. It will help us increase staff capacity and allow us to provide the innovative care and resources the current healthcare system is lacking.  My hope is that we alleviate suffering, by bringing calm, guidance and awareness to the family circumstance and in kind doing the same and broadening the consciousness of those in the world of healthcare.

We would greatly appreciate assistance expanding our funding by way of introductions to major donors and additional sustaining donors including private foundations.  We are continuously looking for board members with untapped spheres of influence, who are willing to understand our relationship model of care.  Additional marketing and media exposure will assist us in name/brand recognition that will assist in retaining current donors and will help us expand to new donors.  Introductions at major hospitals in other major metropolitan areas will aid us programmatically and as we grow we can utilize assistance with systematic expansion best practices.  We would also like assistance in leveraging Sacred Bullet, my life story, by providing more speaking opportunities and allowing CCALS to get in front of more donors, healthcare professionals and individuals who could use our services.

Collaborating with major hospitals, ALS clinics, MDA supported clinics, physician’s associations, hospices and palliative care organizations on patient care, goes a long way to improving effectiveness for all involved.  Our innovative House Calls program and information sharing with MGH can serve as a model on how we can collaborate with all of these partners.  Once we see a number of patients in a facility, the staff gets used to the impact we can make and most of the organizations we currently work with regularly refer patients to us.  By partnering with those organizations listed above we can expand our impact to the broader neurological community. 

Our relationship with MGH will allow us introductions to ALS/neurological clinics all over the country including Cedars Sinai and UCAL Irvine, where we would like to build relationships.