ALS ORGANIZATIONS:
BREAK DOWN THE SILOS

BY LAYNE OLIFF

I was diagnosed with ALS in November 2020. After the diagnosis I spent time with my neurologist discussing treatment options—which were not many. I later arrived at home and continued to be in a fog. It wasn’t until several days later that I decided to research and contact ALS organizations to see what resources are available. Even though there are very few treatment options, there were many—over 70—organizations involved in ALS! The big question for all of these organizations was “Which group should I work with”?

Almost all ALS organizations have a focus—research, advocacy, education, guidance, support, etc.—but many have overlapping missions and program offerings. This was before the signing of ACT for ALS, and at that time many organizations focused on getting this very important bill passed. After discussion with several organizations, I decided to work with I AM ALS. I realized early on that I AM ALS was excellent, but in regards to ACT for ALS, they primarily worked in their own “silo” and did not coordinate their efforts with other organizations. It was apparent everyone in the ALS Community realized the importance of ACT for ALS, but there was very little coordinated effort for the bill’s passage. There was little effort until the fall of 2022 for organizations to “break down their silos” and work together. Once this occurred and with a coordinated effort, ACT for ALS was passed in late 2022.

Passage of ACT for ALS is fantastic, but unfortunately the ALS Community has many additional challenges.  ALS is a rare disease with low awareness compared to other neurodegenerative diseases like Alzheimer’s or Parkinsons Disease. It appears that there is now more communication among select ALS organizations, but silos are still present. There continues to be too many organizations “doing their own thing”, which has led to much redundancy and a lack of organization. Moving forward, we need for all ALS organizations to work together, break down the silos they have created, to achieve the Community’s goals. This will only occur if the lines of communication are open and all 70+ organizations work together.

It is imperative  and essential that the ALS Community start the process of working together in a concerted effort to raise awareness and at least offer more treatment options to cure ALS or provide positive long-term options to make it a chronic disease.  This starts by all organizations realizing the need to work together and opening the lines of communication. If several organizations use this approach, I am hopeful others will do the same.

My ALS Journey…
“The Long and Winding Road”

By: Matt Creen

My journey through ALS has been a long and winding road but filled with great experiences and lots of love. Like most people who are diagnosed with ALS, we were completely floored by the news. But my first thought was, I have never given up any time in my life, and I am not going to start now. My wife took it a little harder, but she eventually came to accept our new, unexpected
journey. Our Catholic faith has been key to our acceptance of this journey. We decided early on to
only worry about what we can control and leave the rest to God.

I first started noticing symptoms in July of 2013. I was stumbling over words that were familiar to
me and I noticed weakness in my hands. I worked near the Loyola University Medical Center and
my primary physician was there. I was fortunate that I was seeing a doctor in a university medical
center, because when I saw my primary physician, he referred me to the Neurology department. I
saw the neurologist there and he scheduled an EMG NCV test, which are the primary way to
diagnose ALS. When I had my follow up with the neurologist, he had the test results on a screen
that I could see. I saw the conclusion by the neurologist who did the test was, probable ALS. However, the neurologist who I was seeing hemmed and hawed, until I finally said, is it ALS? He then said, “We are not experts in this disease, and I want to refer to people who are”. He then called Northwestern Medicine and got me an appointment with Dr. Siddique in the ALS clinic there.

I will never forget that the day of the follow up appointment at Loyola was on Halloween. When I
called my wife and told her that it was probably ALS, she got physically sick and asked me to come home. The reason why I said that it was a good thing that I was seeing a doctor at a university medical center, is because it can take years to get a proper diagnosis of ALS. I was referred to the Neurology department right away, and referred to what I believe is the premier
ALS clinic in the Chicago area.

My wife and I went to see Dr. Siddique at Northwestern Medicine exactly three weeks after my
appointment at Loyola, November 21st. Dr. Siddique was clearly an expert in ALS and performed a few examinations on me. The two that stick in my memory are sticking out my tongue and him observing how it reacted, and the other was him running the handle of his reflex hammer on my foot. Of course, Dr. Siddique had the results of the EMG NCV tests from Loyola. At the end of the appointment, Dr. Siddique said he was 99% sure that I had ALS.

After a rocky start to our ALS journey, my wife, Lynn, and I eventually got into a routine of living with ALS. My attitude was never, why me, it was, why not me, why someone else? Lynn has adopted the attitude that I am not sick, just retired with a different way of life. As I said, we have relied upon our faith to get through life with ALS.

I am not going to say that life with ALS is easy. It is very difficult. I cannot do anything for
myself, and Lynn does everything for me. Despite the difficulties, we try to live life to the fullest.
We go to a lot of concerts, visit family and friends, and even travel by airplane. It is very difficult
to travel, but we like to go to Florida in the winter or spring. I have to contact the airline at least a
month in advance and arrange for someone to lift me from my wheelchair and into my seat. If there are any pALS reading this who want to know how we travel, email me at mdcreen@gmail.com I have a summary I’d be happy to share which describes how we do it.