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