ALS Awareness Month: Colonel (Retired) Scott C. Johnson

Scott and I were social media friends. We met shortly after my husband, Tom, a veteran, was diagnosed with Amyotrophic Lateral Sclerosis. We met in an ALS forum.

Scott was great at sharing resources. An impactful share with me one time was how much he benefitted from having a service dog. With his encouragement, I applied to the same organization on behalf of Tom: Patriot Paws. Two years later Tom received his sweet service dog Maddie. Maddie has been all Scott shared about his service dog, and more. It is a beautiful relationship to witness.

I admired Scott’s fortitude for not accepting the status quo. Status quo being ‘I am a veteran with ALS and there is nothing I can do about it’. He never stopped asking questions like these: Why are veterans getting ALS? Why do some VA’s give more home care hours than others? Why aren’t VA’s consistent from one to the other? Why aren’t VA’s offering ALS clinics? I liked that he was outspoken. He was a great advocate for veterans with ALS.

A good example of his advocacy is evident in the multiple comments he made at the end of this article:

SEC Shinseki’s decision to make ALS 100 percent service connected vice a minimum of 30 percent in JAN 2012 was great. In terms of long term commitment to an individual Veteran with ALS, it means little since most Veterans with ALS only live between 3-5 years from diagnosis.

Did he work with Congress to ensure spouses of post-911 Veterans with ALS were included in the full Family Caregiver Program and received the same stipend spouses of severely disabled injured post-911 Soldiers? NO. Has he gone to Congress and asked them to change the law to include spouses of post-911 Veterans with ALS? NO. Has he requested any funding from Congress to conduct research into actual ALS treatment since being appointed? NO. Has he established an overarching ALS care protocol to standardize care across the VA for Veterans with ALS? NO.

Scott also maintained a blog: The ALS Battlefield, Please take a few minutes to honor him by visiting his blog and meet his family.


Branch: Army
Served: 1988 – 2010
Hometown: TX

Colonel (Retired) Scott C. Johnson enlisted in the U.S. Army in January 1988, and was commissioned through Officer Candidate School in June 1988 as a Second Lieutenant in the United States Army Corps of Engineers. Medically retired in July 2010 due to ALS/ Lou Gehrig’s Disease. Currently working as an independent advocate. MILITARY AWARDS: Legion of Merit; Bronze Star; Meritorious Service Medal; Army Commendation Medal; Joint Service Achievement Medal; Army Achievement Medal; Parachutist Badge; Sapper Tab; Kosovo Campaign Medal, Iraq Campaign Medal, Global War on Terror Service Medal

Scott’s obituary:

Thank you, Scott, for your service, tenacity, and advocacy. We continue to fight for more funding for research and improved services to veterans with ALS and their caregivers.

Since Scott’s passing thousands more veterans have been diagnosed with ALS, and thousands more have died. We do not need more veterans with ALS. #endALS #stopthemadness