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 would show up on the job site, aware that they were supporting a unique organization, but not quite sure what made it unique.

On May 5th at the Sea Crest Beach Hotel, I had a chance to set the record straight. We had gathered there with our general contractor, Ralph Cataldo, his team, many of our families, past and present, and the 78 contractors and sub-contractors who had supported the project. The facility was nearly complete, and it was time to honor those who had been so generous with their time and resources.

I spoke about our holistic, relational model covering every aspect of ALS care, our focus on quality of life, and when needed or wanted, end of life. I shared that we loan vans to help people get to appointments, and equipment like wheelchairs, lifts and ramps. I talked about our No Red Tape policy, our Cultivating Compassion workshop series, our gatherings for the Men and Women of ALS and our Caregiver to Caregiver events.

I mentioned our augmentive communication expertise and our government affairs and social work expertise, how we help people navigate the complexities of Mass Health, Medicare and insurance. I mentioned our House Call program with Mass General and our work with the UMass Medical School.

As I was wrapping up, I looked around the banquet hall at the 200-plus guests in attendance. The faces of those who didn’t know us looked back at me with surprise, kind of like, “I had no idea.” When they came forward to receive their beautifully etched glass awards from Ralph and I, these hardworking men and women were beaming. It seemed to me they were filled with a deep appreciation for what their labor would mean for those our facility will serve.

And still, the question lingers: What do we do? And perhaps more importantly, Why do we do it?

Not long ago, I received an early, 8 a.m. text from Will, son of Connie, “Please call.” I called Will and he said Connie had just passed away. “I’ll get there as soon as I can,” I said. Several hours later, I pulled up to the home and was greeted at the door by Will. “Ron,” he said, “so good to see you. Mom had a gentle, peaceful death.”

I gave him a hug and said I was grateful it went smoothly. In my heart, I wasn’t surprised. Connie had a strong ability for self-inquiry. She had openly faced the reality of her dying, in a very conscious way. She was prepared to go. A few days before her transition, she had taken off her rings and given them to her husband of 60 years.

“I need you to have these now, Tom,” she had said.

What a beautiful and symbolic act of letting go, a rite of passage. The trappings of this life cannot accompany her into the next. She must be light and free and ready for whatever lies ahead. I bow to you, Connie, for the wonderful gift you gave to your family.*

I waited with Will for the funeral director to show up and take Connie’s body away. Tom was on the back porch working on the obituary with his daughter-in-law, Bonnie. We were there together, being with dying, not saying much, taking it all in—bearing witness and holding space, as I call it. Just being. It can be incredibly powerful in times such as these.

This is an example of the intimate work we do that is often unseen. Maybe our presence brings some light into a dark situation. It’s understated and behind the scenes. I call it stealth caring. It’s how we move in and out of the lives of the 600 or so families that are in our circle of care. It’s an enormous number for an organization of our size.

When I left Connie’s family and headed down the road, my phone rang. It was a man from New Jersey. They had gotten the diagnosis that Shirley had ALS, and someone had told them about Compassionate Care ALS. My tears were not dry yet from saying goodbye to Connie, and now I was greeting Shirley and her husband, trying to bring some calm to the chaos that had just arrived in their lives.

THIS IS WHAT WE DO.

This is how a day can go, with hundreds of families at various stages of the process, having needs unique to those stages, and most importantly, unique to them. No two families are alike. No two people will walk with ALS in the same way. What we bring, and what makes us unique, is that we listen, we sense, we feel into the situation, and we do our best to give only what will serve. No more and no less.

I like to call it dexterity, a certain kind of nimbleness. It’s like you’re in a ballroom and there is a waltz going on, and everyone wants to dance with you. How do you move from one partner to the next, look them in the eyes, make that connection and begin to move together? How do you do it without stepping on toes? Without going too fast or too slow, or missing the beat?

I felt this idea of a really full dance card at our first annual walk, the Stroll & Roll fundraiser, May 18 at Bourne Farm in Falmouth. Folks were rolling and strolling and mingling about, and my team and I were connecting with everybody in sight! I could have walked the course three times and not gotten the same workout I did having all those conversations! And there were so many people I missed even seeing.

There were families from years past who I had not seen for a long time, and yet have remained our friends and supporters of our work. There were new families we had just met as well. Everyone had come together in support of one another and our noble cause. Their support today was planting the seeds for care that would be needed by the families yet to come.

I recently met with Kelli, who had been with us through her dad’s experience, coming up on ten years ago. She had taken some time away to heal, and now she was back. She was ready, ready to pay forward, if you will, what had been given to her. We sat and revisited some of the experiences we had gone through together with her dad. Quite a journey. The big flow of compassion, moving in unseen ways, had brought her around like the Gulf Stream, flowing along the coast of Cape Cod.

It’s those relationships that allow us to do what we do—what we have to do to sustain our work. We have to be flexible and nimble, weaving in and out of lives, showing up for those in need and also showing up because we too have our needs.

Buddhists might call it skillful means or equanimity. We feel our feelings while not being attached to them. We see them as fluid, not static things, always moving, and so we move through them too, smoothly and gracefully to the best of our ability. We stay light and limber, not dragging our personal baggage around from one place to the next. For me, that’s a very important teaching. It’s how we walk along with our families as best as we can, staying present in the moment.

THIS IS WHAT WE DO.

Through our work and how we operate, an amazing thing has come to be. It’s the Heald Center, for education, retreat and sanctuary. I believe it is the only facility of its kind in America, perhaps the world, dedicated to those living with ALS, and those caring for them. It is here and nearly complete because our community got behind the vision, because you all recognized what it would mean to the individuals and families living with this difficult disease.

The retreat center is waiting there like a loving mother with her arms wide open, welcoming you home. The image reminds me of my own mother, who held me and protected me to the best of her ability when I was a boy. She could only do so much, because she didn’t have the resources, didn’t have the teaching, the community or the financial backing that would have made her stronger.

So too, our sanctuary here in Falmouth needs resources to deliver its gifts. It needs the comfortable and welcoming furniture that makes us take a deep breath and settle in. It needs the staff to take care of all the details. It needs a nest egg in the bank so that money is never an issue for those that need its love.

My point is that we’ve got a wonderful facility, built with love and incredible talent, but our mission is not complete. We need to make those finishing touches immaculate, and then staff and finance the facility so that it can fully serve our friends and families living with ALS. We are now finishing up our capital campaign, and building a solid, sustainable base that will keep our center going strong for years to come.

Many of you got us this far and I am forever grateful. We appreciate your support now, and in the future.

With love,
Ron

*I read this part of the story over the phone to Will and Tom and was surprised when Will said, “That’s not quite how it happened, Ron.” Really? “Yeah, Mom’s fingers had become swollen and she couldn’t get her rings off so she asked us to call the fire department to cut them off.” He went on to compliment the fire fighter for doing so in a kind and gentle way. After that, Connie placed the rings in her husband Tom’s hand for safekeeping after she was gone. That in itself I find profound and symbolic, and a testament to their 60-plus years of marriage. I was glad they clarified that for me. It’s a good example of how we sometimes hear things differently than how they actually happened. In this case, I was there tending to four people and in the midst of all that heard the story in a certain way, and didn’t take the time to inquire further. A good reminder that awareness and perception are so unique to every individual in a given situation.

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 place of insecurity, our language can cause needless harm.

For example, some families are not interested in talking about death. They want to focus on living, being excited about a new integrative therapy, hanging out with their children and making every moment last. Our staff emphasizes relationship over information, using our natural instincts to go where people want to go. It’s about doing no harm. Communication is a slow and subtle exchange as we navigate the rapidly changing terrain of ALS.

All too often, I encounter healthcare professionals who, in my opinion, are inexperienced or insensitive to helping people navigate a serious illness or end of life. If people in the field have such a hard time, imagine how difficult it can be for family and friends who have no training? I was there myself in the early days of my tending to Gordon Heald. Gordon taught me the basics. I will try to do the same for others.

I do my best not to ask people, “How are you doing?” or “How are you feeling?” It can often bring up the response, “Well how do you think I’m doing? I have ALS.” Questions like, “How’s your day?” are often the source of an upset right away. I hear all of the time how these questions can adversely affect people, and I try to avoid them.

I start out by saying, “It’s really nice to see you.” If they are working or involved in some project, I ask how that’s going. Effective communication with those in difficult circumstances is about knowing who they are. It’s taking the time to make a connection, then noticing what’s going on in the moment. It’s looking around, being curious about their lives, careers, family, hopes and dreams. Engage with them about who they are. There are no set rules here. It always looks different. Many people are not in a frame of mind to speak about the disease—and honestly, it’s not necessary.
In the art of language, the central element is the ability to listen. Just show up with an open heart. If you are new to being with a friend, relative or client with a terminal illness, just be honest. Take the risk to be vulnerable. “I don’t know what to say,” is a great place to start. Be with whatever comes next, no agenda, nothing to fix or figure out. Open up and relax. Take a deep breath. If no words are spoken, honor the silence.

If the conversation moves into difficult terrain, slow down and don’t make assumptions. Ask permission before asking a probing question. Ask if it’s okay to explore this or that. Often I will ask, “Do you want to know what I know?” Asking permission is novel, but I don’t think it should be. It comes down to empathy and awareness. Put yourself in the other person’s situation. Be sensitive. Learn to know when no means no and move on.

One of the ways I hope to connect and bring calm into people’s lives—and possibly make them curious—is to say, “I’m not here to tell you everything you don’t want to know.” I say it because it expresses a different point of view. Usually those with knowledge seem compelled to express it, whether wanted or not, relevant or timely. My emphasis is always on the relationship. Developing trust and rapport become the gateways that allow deep and meaningful conversations to emerge over time.

It’s not about having answers—even if you do have valid information to share. No two people are alike. No two circumstances will be the same. One person wants to know everything, talk about all of the potentialities and possibilities right away. Another person wants to take them one at a time as they arise, or not at all. Gordon was a wonderful example of a man who made his choices by never making them. It’s a way I often see and have learned to honor.
Last week I visited a woman living in a facility, on a ventilator, unable to communicate. Her daughter arrived and I asked her how she thought things were going with her mom. “Ron, it’s in God’s hands,” she said. “That’s what she’s always believed.”

Okay, that was my cue. I heard the sentiment under the words. She wasn’t open to talking about end-of-life possibilities. Fine. I didn’t bring them up. I did not know this family well and had not had the chance to speak with them about quality of life, which is an important part of the discussion. All I said was, “If things shift and you aren’t sure, my team and I are here for you. You don’t have to make the decisions on your own.” Just knowing that you’re not alone can make all of the difference.

Remember, communication should be on the terms of those in the situation. This is important. We enter the space with humility. We enter in the spirit of service, in the spirit of bearing witness. This is a practice in awareness. We are learning to be sensitive and compassionate, to leave our personal baggage at the door.

If you really want to show up and be of service, the most important step is what you do before you arrive. Take a look into your own heart, into your own mortality and fears. Feel that deeply. Walk into the fire of your wounds and uncertainties. Consider your final days. How do you want to die? What are the blessings you wish to leave behind? Take time for self-inquiry and it will make a world of difference in how you show up for someone with ALS or any other fatal illness. It’s a never-ending process of self-inquiry.

Because language is so important.

Blessings,
Ron

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 the packed house of many friends and families and was awash in those thoughts and feelings. Twenty years!

As I often do, I was thinking of Gordon Heald who passed on October 30, 1998.

I was also thinking of Gordon’s dear friend, Phil Robertson, who passed away recently. For those of you who have participated in the Falmouth Road Race, we have always gathered at the five mile mark in front of the home of Phil and his wife Anne. For all these years the Robertsons have generously given us a place to gather to cheer our runners on. Phil was the gentleman who was up on the ladder for the last 35 years or so, hosing runners down as they ran past. I mention this because it brought me to a pause, to reflect on the extraordinary winding path I have walked with families, a path filled with obstacles, uncertainties, challenges, visions, triumphs and successes.

Scanning the crowd, realizing twenty years… In that moment of pause I felt grateful for the opportunity to serve and to remember. To have been able to create an organization that enabled us to tend to and care for individuals and families, navigating the extreme and unfathomable complexities of ALS. To enhance quality of life and to explore end of life, we have become ever more familiar with this uninvited guest,

this intruder who becomes part of the larger story. Acknowledging impermanence as a reality rather than an imaginary construct is something I invite all of us to explore and something that I dance with regularly.

My staff and I give thanks for the continued faith and trust in the work and skills that we bring to the bedsides of all of our families.

Always,
Ron

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, for example;

• Lately, I have been wearing my imaginary hard hat over at the Beach Rose Inn, walking among the backhoes and bobcats with Ralph Cataldo, our builder, while he updates me on progress on the CCALS Education and Retreat Center. Recently, CCALS board member Darlene Salatto Rose was in town to help pick out the fixtures, flooring, lighting and wall finishes for the center. She has such a great eye for understated elegance. Tasteful, beautiful and intimately tied to our vision of a sanctuary that immediately brings a sigh of relief and a sense of homecoming to our visitors. Darlene has been an integral part of this project and I am extremely grateful for her time and effort.
• On November 1, 2017, we launched the ALS House Call Program in partnership with Massachusetts General Hospital’s ALS Clinic. Thanks to this partnership, we will get to share our way of tending to ALS families with the doctors and nurses from the clinic. It will be like the old days when doctors showed up carrying a black medicine bag and a big appreciation for the relationship with their families –not just their illnesses. I’m really excited about this new program. To me, it is the future of holistic healthcare in the United States, and something I’ve dreamt of and envisioned for a very long time.
• We have been following and refining our relational model for nearly 20 years and will celebrate that milestone with a Gala on May 18, 2018, at the Fairmont Copley Plaza Hotel in downtown Boston. I can’t believe it’s been almost two decades since Gordon’s passing, October 30, 1998. We’ve certainly come a long way since then! I look forward to seeing you there
• In addition, on the eve of our 20th anniversary, WBUR-radio, a National Public Radio (NPR) Station in Boston, ran a story about me and our work. Award-winning journalist Lisa Mullins began working on the story when I met her at our Gala in May of 2016. She rode with me, watching what I do and she interviewed families. The story aired nationally on over 900 NPR stations, resulting in calls from Arizona, Iowa, Louisiana, Alaska and Florida! If you are interested in listening to the story visit the link on ccals.org, Be sure to click on the red button and listen for full effect.

I am very grateful for the continuous unfolding of programs, projects and opportunities presented to CCALS and as always for the incredible support of our families and friends for all of these years. You have been there for us so that we can be there in service for others, not just today, but tomorrow and in the future. Here’s to the future.

Always,
Ron Hoffman
Founder

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 Betsy and myself embarked on a journey few could imagine.

My tending to and caring for Gordon began in the Spring of 1997.

As weeks and months passed he became a friend…a mentor…a teacher and a benefactor. We spent a great deal of time together talking, sitting and discussing life in the way that Gordon could at the time. In a quiet moment of contemplation, early on in his diagnosis, he would ask “Why me?” My response was, “maybe having this diagnosis now will impact the life of a person you would meet along the way, the paperboy, someone at work, a person you saw at the hockey game, you may have no idea how or why or what it means, but they will be impacted. Little did I imagine what was to follow.

In truth, Gordon’s circumstance reached far beyond what any of us could have envisioned. He unknowingly impacted thousands upon thousands of lives through his and Betsy’s support for CCALS. Because of Gordon’s diagnosis and circumstances an extraordinary organization has been created. He inspired the unique model of CCALS, that in a perfect
world would be replicated many times over.

And today, 20 years later, I have seen the growth and evolution of CCALS to serve thousands of individuals and families in Massachusetts, across the US and around the world. We have held many workshops and gatherings. We have developed productive partnerships through ALS One; through our work with the neurologists and clinical staff at Mass General Hospital and UMASS Medical in Worcester; and through the extraordinary research group, ALS TDI. We are building our Education and Retreat Center which will begin operating at the end of 2017. And I have been blessed to find my life’s work. These are a few examples of what is possible and how one life can transform so many…. the work continues.

Twenty years…I look back with gratitude in honoring Gordon’s life and the memory of countless others as well as honoring all those we serve.

With deep Gratitude, thank you Gordon and Betsy,

In Service,
Ron

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 with ALS families as well as with hospital staff members.
A 24 hour RadioThon commencing at 6am on November 4th that will fundraise for CCALS in honor of Brad Martin was organized by the radio station for which he works, Cool 102.

I invite you to see the trailer of a feature length documentary titled Being There (available at www.being-there.ch) which I was asked to be part of. It will be screened in Switzerland in November and December. We will post further details of the US release on www.ccals.org.

With the families I have worked, there is an opportunity for the exchange of ideas and knowledge. A give-and-take of conversation, the sharing of thoughts, a lending of expertise. Our families are what make the CCALS community so strong and resilient.

It is with your continued support that we are able to make the reflective space of the Education and Retreat Center a reality.

It is with your constant care that we are able to serve an ever-growing numbers of families caught in the extreme web of the ALS circumstance. You make it possible.

Side by side,
Ron

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 research institutions, we have made great strides in realizing my dream of building our ALS Education and Retreat Center and we have seen many individuals and organizations support our work. The highlights of the last year for me include:

CCALS’ becoming a founding member of ALS One

ALS One is a partnership between Mass. General Hospital, UMASS Medical Center in Worcester, ALS TDI and Compassionate Care ALS to bring CARE and a CURE to ALS. Through this organization CCALS has assisted in developing a release agreement with MGH and has worked with the ALS clinic to share information about treatment and care for over 70 patients. CCALS has also dedicated one of our handicapped accessible vans to transport ALS patients to clinical trials at all three research partners and hired new staff members to support additional referrals from ALS One partners. This is just the beginning and we are looking forward to a long partnership with these institutions.

CCALS held an enormously successful Gala that raised more than $250,000

The Fairmont Copley hosted a star-studded evening on Friday, May 20 to benefit Compassionate Care ALS (CCALS). The Gala raised over $250,000 in support of care for patients and families living with ALS. The evening was hosted by former WCVB-TV news anchor Natalie Jacobson and featured a talk from best-selling author Lisa Genova. Also in the audience were former WCVB-TV weatherman Dick Albert as well as Chris and Peyton Lambton of Bachelorette and Bachelor fame.

A Challenge Grant that will allow us to complete construction of our Education and Retreat Center

One of our families has issued a dollar for dollar challenge grant that will match donations supporting our new Education and Retreat Center. All donations towards the campaign will be matched up to a total of $500,000 through November 20, 2016. When fully realized this generous grant will allow us to complete construction and begin programming at the Center. For more information and to contribute to the center please visit www.ccals.org/retreat.

As you can see, we continue to be very busy in great ways. I hope to cross paths with many of you along the journey over the next six months to ensure we maximize our challenge grant.

In Service,
Ron

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 his wife Amy whose cousin Pam Crease was one of our people and passed with ALS in 2010. We met Pam through Amy’s father, Paul Dussault, former owner of a local pharmacy here in Falmouth. Another cousin is Beth McLaughlin, who is married to one of our board members Michael McLaughlin, who originally shared news of CCALS with her uncle. Likewise it was Beth who introduced Doug Oakley to us some years ago. Doug also became a board member, an advocate of our work and most importantly, a friend. He lived with and died with ALS. I am very much saddened by the sudden passing of Rob Millisor, 51 years old, father of a 10 year old daughter and a 7 year old son. He was a caring man loved by many.

I am reminded of the impermanence we face. How instantly we can go from living our lives to “gone beyond” in the blink of an eye.

As I often ask, “are we willing to become more familiar with the reality of our mortality? Our death!” I feel it is imperative we do so. We must explore that reality. I invite you to not squander the opportunity.

Someone recently called me an expert on living with and dying with ALS. After 18 years of working in this field, this may or may not be true. I have seen, experienced and witnessed a great deal with so very many. One thing I learned and hopefully embody is the ability to bring calm amidst the chaos. And as many of us know often there is a raging storm brewing in the world of living with this devastating disease. I feel it is necessary that we learn to bear witness to this storm. To do so we must hold space in order to allow whatever needs to unfold for those we are in service of.

I have recently been in meetings with the nursing staff at the Massachusetts General Hospital ALS Clinic. Gordon Heald, who I tended to in 1997-98, was a patient there. Thus, I have a long history with the clinic. I am grateful beyond words that our meetings and sharings have bared fruit in finding pathways for our mutual efforts in tending to and caring for our common people/patients. I have learned so much more of the challenges that these wonderful folk of the ALS clinic face. I look forward to continuing our work with them, sharing what we offer to our families and those in healthcare, likewise in learning more about what they bring forth to our people.

It is important to find and define the best possible care we can for those navigating the complexities of living in the world of ALS. The appropriate care is essential and not defined or limited by traditional means or buzzwords. I promise that we at CCALS will continue to do our very best in tending to and caring for our families.

I thank my friend Kevin Gosnell for being a catalyst in bringing us closer together with those at MGH and hopefully other institutions. Much is in the works. Your support is imperative.

In service,
Ron

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 the ALS experience from diagnosis to end of life and all that happens in between.

I have profound thoughts and opinions on the institutionalization of our healthcare system as I write in my book, Sacred Bullet: Transforming Trauma to Grace While Tending the Terminally Ill.

In 1997-98, Myotrophin was a drug in the pipeline that showed great promise. Gordon Heald, the gentleman I cared for, wanted very much to be part of this trial. The trial was closed, yet Gordon was adamant about obtaining the drug at whatever the cost. For him it was about hope, a last chance at life. The drug was being tested in Japan at the time, very much out of his reach even though he would have written a check for any amount. Unfortunately, the check did not matter as he was unable to procure the drug. The fact it was found to be ineffective mattered not. It was his choice, his decision, his desire. He had absolutely nothing to lose, except hope.

GM 604 has been shown to have some positive results. Eric Valor, a man living with ALS, picked up the mantle in leading the charge to make it available to those living with ALS now without waiting for the three plus year process involved in clinical trials. A handful of individuals including my friend Matt Bellina have joined the cause. I have read that Genervon, the biotech company, has been working on this for 20 years. Accelerated Approval, in the world of big pharma, is a big ask, yet until we are willing to think outside the box, those living with ALS and their families continue to live in extraordinarily difficult circumstances beyond imagination, often suffering in ways most people have no reference for. To diminish hope can be a cruel punishment.

As the situation now stands, the eventuality of death is inevitable. So I ask the FDA and I ask those who oppose to making GM 604 available, what is the harm in researching as you normally would and approving accelerated approval?

Outside the box? …Yes!

Make it happen, Now!

Ron

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 in process, our future is bright, we are walking on solid ground.

• I would like to welcome all our new staff members, our new Executive Director Tom Gilligan who in a few short months has been instrumental in improving our internal systems and programming. We also have welcomed Kristine Copley, Jennifer Gauvin and Paul Shea who are now working with us in different capacities to enrich the services we are offering.
• I have been asked numerous times in regard to the Ice bucket challenge had CCALS been the recipient of the more than 3 million donations for more than $130 million raised what would I do…

Research

I was very excited to see that $21.7 million is going to fund research collaborations that would not have existed without the funding. Seeing many familiar research names being funded made me pleased, grateful and excited about the future possibilities in the realm of hope.

Beyond research, I would invite the ALS Association (ALSA) to look seriously at these suggestions, some of which they may be already focused on.

Augmentative Speech Devices

I would give serious consideration in support of John Costello, director of Augmentative Communication Programs at Boston Children’s Hospital. To support his extraordinary efforts in working with individuals living with ALS in obtaining Augmentative Speech Devices such as the Tobii. These devices aren’t for everyone, but there needs to be a greater opportunity and access for those who would benefit from these systems which can cost up to $18,000. There is great opportunity for collaboration here.

Professional Training

Another pressing need is to have trained experts in the field of Medicare and Medicaid, especially state specific training. I am talking nationwide. I know the Massachusetts state chapter often excels in this area. This would bring great relief to families dealing with not only a progressive, terminal disease but also with the nightmare of navigating the bureaucratic system which continues to exist.

The CCALS Model

Most importantly, I would invite ALSA to bring in-depth education and training to your national team and state chapters. This training would be based on the concepts, virtues and practices of the relational model created and implemented here at Compassionate Care ALS. It would bring forth the additional tools and support to your staff that they so richly deserve. There is great opportunity here for collaboration.

I would also like to give a shout out to ALS Canada for the fine, innovative and thoughtful work you are doing. I am looking forward to the opportunity for future collaboration as well. Also a heartfelt thank you to my friend Pete Frates, for the friendly viral “firestorm” he created. And to his family, who are a beautiful example of walking ‘side by side’ with their son, brother and husband.

I am pleased to share with you the opportunity to see the extraordinary documentary film “Imber’s Left Hand” which will be showing at the Jewish Film Festival at the Museum of Fine Arts in Boston on November 9, 2014 at 3pm. This film had its feature length world premiere at the Carmel International Film Festival on October 17. I encourage you to see this powerful story of a great man and a great artist, who lived with ALS as he danced his dying, a true love story. Visit CCALS.org for film information.

I am also happy to announce that the website for my memoir is now live. Please visit www.sacredbullet.com or www.ron-hoffman.com. The book delves deeply into the world of living with and dying of ALS as well as our broken healthcare system, domestic violence and so much more. I have been told it is rich in many ways. My experiences put forth are relevant to all those working in healthcare as well as all families living with ALS or any other illness, terminal or otherwise. A portion of the proceeds will go to support the work of CCALS.

I continue to be grateful to all of our current families, those who have gone beyond and to those we have yet to meet.

In service,
Ron