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