Fred, my beloved husband of 43 years, was an awesome husband, father, grandfather, and friend. To us who loved him, he was extraordinary.  But in his love for playing the game of football, he was quite ordinary and like so many other men and boys.

It is my hope that Fred’s story will give another human face to CTE, the devastating, but preventable, dementia caused by head trauma. I hope that Fred’s story will encourage parents, coaches, players, and medical professionals — whole communities — to support the work of the Concussion Legacy Foundation and the BU CTE Center. And, finally, I hope his story will help former players and families struggling to find answers to bewildering changes.

CTE caused my Fred to change so subtly and so slowly, but so remarkably, over time that it’s hard to remember the Fred of our beginning and impossible to pinpoint the moment CTE laid its claim.

Fred and I met in college, the unlikely story of a blind date going well. . . his roommate dating my roommate. We were Navy brats who shared a love of traveling.  We raised two fine sons, Shayne and Jeremy. We were supported by family and blessed to gather lifelong friends along the way, many attracted by Fred’s warmth and humor.

Anyone who met Fred for the first time knew immediately that he loved people. He drew people to him with his mischievous sense of humor, wry smile, and pranks. He never failed to bring a smile to those he lured into his practical jokes. He was fun and could engage strangers whether in a village along the Amazon or in a checkout line at Kroger’s. Who else could entice a couple on the eve of their wedding to abandon their wedding party to join us strangers for a few hours of laughs? He was the proverbial “people person.“ Fred’s humor drew people to him, but his honesty, compassion, and unpretentiousness kept them there.

Typical of many boys, Fred grew up with a love of sports, particularly football. At Elkton High School in Virginia, he played football (All-State), basketball, baseball and track. At Virginia Military Institute he played left tackle on the football team for four years. He said he went to college to please his parents, but stayed to play football. He shrugged off “getting his bell rung” as just part of football. In a televised game, he was taken from the game after a hard hit and returned minutes later. . . but joined the huddle of the opposing team. A picture of this play in a local newspaper is a haunting reminder of that day. Once seen as a humorous memory in his mother’s scrapbook, it now represents the kind of hit that had potential long-term consequences.

After graduating from VMI in 1969 with a B.A. in Economics, Fred served as an Army Field Artillery officer for 10 years, beginning with a tour in Vietnam where his men would later describe him as a respected leader: caring and calm under fire. These qualities were used to describe Fred repeatedly throughout his military career. Fred’s last assignment took us to Germany where Fred jumped at the opportunity to join a rugby team. The oldest and least experienced on the team, he played with fervor and enthusiasm but, unfortunately, in the style of football which led to several concussions.

In 1979, Fred left the Army to pursue a new career in sales. During the next 20 years, he worked for several companies in the paper industry, and eventually worked himself into management.

Along the way, there were nagging concerns about very subtle changes in judgment, temper, and confusion in doing seemingly simple tasks. Things just didn’t seem right. And Fred’s long history of headaches seemed to worsen.

Gradually, the early hints of something wrong evolved into serious mistakes, hostility to those whom he disagreed with and confusion, particularly in math, problem solving and organizing. He had trouble writing coherently, learning new computer software, and using his cell phone. He began having night terrors and would yell out that people were trying to get him. Early neurologists and imaging found nothing wrong. . . and, as we would be told often in the coming years, his “memory” was great.

In the last two years that he was employed, Fred was demoted from general manager to sales manager to salesman, and finally to dismissal. Confusion and inappropriate responses in interviews cost him any chance of getting another job. Neurologists attributed these changes to depression from losing his job, but antidepressants didn’t stop the declines. Fred recognized that he had trouble with word finding and with learning new things, but rejected any other suggestion of personality change.

The night terrors and an obsession with watching war movies took us to the Veterans Administration in 2006 where Fred was screened for PTSD. Fred’s ability to communicate and remember events 36 years in the past were iffy at best by then, so the screener did not see PTSD; but he did see that something was definitely wrong and suggested more testing. After years of searching for answers, Fred received a tentative diagnosis of a dementia that, like CTE, begins with behavioral and personality changes. By this time, Fred’s mounting frustration turned to frequent angry outbursts.

When research started emerging about a kind of dementia that could be caused by concussions and repetitive hits, something clicked.  Was it possible that Fred’s years playing football and rugby had caused his dementia. CTE wasn’t a dementia Fred’s early neurologists recognized as a possibility. And I was initially skeptical, too, since most of the first cases of CTE had been found in elite professional athletes, athletes who had played much longer and at a much higher intensity than Fred had. After all, if Fred did have CTE, how many thousands of Freds could be out there. What a truly horrifying possibility!

The boys and I needed to know the truth, and I was absolutely certain that Fred would want that too, so Fred became part of the Concussion Legacy Foundation and BU CTE Center brain donation program.

CTE took Fred little by little, one ability after another. It was especially hard on him because he understood on some level and was often scared. He knew us to the end even though he had lost his ability to think, talk, and walk. I miss him terribly, but know how blessed we were to have had so many years of fun, adventure, and love, the memories of which will last a lifetime. And although our grandchildren never got to know their fun and loving grandfather, I am comforted knowing that the best of Fred lives on in our sons.

As hard as his illness was, the confusing years searching for answers and then the heartbreaking steady declines, the real tragedy was that Fred’s death from CTE was totally preventable.

Those of us who loved Fred are comforted that Fred’s death and story may help researchers learn more about CTE. . . Perhaps to find markers and educate doctors which will lead to earlier diagnoses and thus shorten the anguished years of not knowing. Perhaps to sound the alarm about the potential epidemic among us. . . Perhaps to alert parents, players, and coaches of youth contact sports to listen to the research. . .  and perhaps to save another typical young person from living Fred’s story.

I can’t thank the researchers at the Concussion Legacy Foundation and BU CTE Center enough. Their dedication not only for uncovering the depth of the problem but also for searching for solutions is inspiring. Thank you, Dr. McKee, Dr. Stern, and Chris Nowinski and the staffs at CLF and BU for giving Fred’s family and friends the peace of finally knowing and the opportunity to help others.

Our little West Fargo farmstead became the most unsafe place on earth for our family last summer, but we didn’t expect the nightmare to end with Greg’s death.

Greg was a linebacker for the North Dakota State Bison and for the Minnesota State University-Moorhead Dragons. He first played tackle football in junior high before starring for his high school team in his hometown of New Prague, Minnesota. After his football career, Greg remained just as competitive, training horses and competing in Cowboy Mounted Shooting in Minnesota and North Dakota all his adult years.

Difficulties and conflicts came slowly and insidiously over the last few years. On May 5, 2018, Greg was knocked unconscious when he came off his horse running at top speed and hit the ground head-first. The months that followed brought turmoil and heartbreak as we, Greg’s family, became entangled in a confusing, bizarre nightmare, ending with Greg’s suicide on September 11, 2018.

Pathology results showed signs of early-stage Chronic Traumatic Encephalopathy (CTE): the stages associated with personality changes, impulse control and depression. Greg’s brain was being assaulted by two levels of damage: at least one recent major head trauma as well as a degenerative disease caused by repetitive head impacts, which for Greg started in his early years.

It was only after Greg’s death that we learned that early-stage CTE causes degeneration in regions of the brain that in similar diseases have been shown to cause psychiatric symptoms like depression and anxiety.

We would be having a very different conversation today if it weren’t for what I learned from the Concussion Legacy Foundation.

Before Greg died, I had no idea a person’s concussion symptoms could be emotional instead of physical. Aside from headaches and fatigue, Greg’s repeated complaint was that he was “just so frustrated.”  I thought CTE was only an NFL problem, never once thinking the brain disease could happen to anyone with a history of repetitive head trauma.

Because of this lack of knowledge, I didn’t request to have Greg’s brain sent to the UNITE Brain Bank in Boston. I had the medical examiner send what small samples of tissue he routinely retained to researchers to search for any signs of damage. Tau protein was found that was consistent with early-stage CTE, but the researchers needed the whole brain to get an official diagnosis.

Knowledge can save lives, but it can also heal the broken hearts of family members who get answers in a diagnosis after losing a loved one.

CTE can only be diagnosed after death. Every year, we will hold a fundraising campaign in Greg’s name to support the efforts of Concussion Legacy Foundation because they help fund the research at the VA-BU-CLF Brain Bank. Researchers there are working tirelessly to find a way to diagnose CTE in the living and ultimately cure it.

Click here to donate to support CTE research in honor of Greg Stanke’s Legacy.

If you are struggling to cope and would like some emotional support, call the Suicide & Crisis Lifeline at 988 to connect with a trained counselor. It’s free, confidential, and available to everyone in the United States. You do not have to be suicidal to call.

Chad had an outstanding athletic career. He began playing football at ten years old at Dexter School, a boys private day school in Brookline, Massachusetts. He was selected to the State Boys soccer team and played varsity hockey and football at Noble and Greenough School. He then went on to become a three-year starting varsity defensive back at Columbia University. After college, Chad took up tennis and participated in the U.S. Father and Son Championship at the Longwood Cricket Club with his father. Later in life, he became an avid golfer.

Chad was one of the brightest people I have ever known. Chad was a precocious reader with an exceptional curiosity about everything from the evolution of all living creatures, the geographic wonders of the earth, the significance of studying ancient cultures and architecture, and even the evolution of ethics and moral behavior.

When he was ten years old, we visited the Museum of Fine Arts in Boston to see the Pompeii exhibit. He described the experience as the moment when he knew he wanted to study the history of Roman and Greek civilizations. He would continue this passion and go on to major in the Classics at Columbia University.

He would often tell the story about how he chose this study. He called me one evening and said he needed to declare his major and I asked him what really interested him. He said, “Latin and Greek.” I said go for it and he said, “Well, it will not get me anything except maybe being a pharmacist with Latin words for prescriptions.” We laughed when, in the fall playing varsity football at Columbia, the coach said they did not know how to help him through the semester since no one had ever played football and majored in the Classics.

His passion for ancient civilization led him to travel extensively in and around Italy and Greece, visiting remote sites, particularly lesser-known ruins in Sicily and out of the way Greek islands. His scope of knowledge was extraordinary. He could converse for hours on subjects from the Roman poet Catullus to Grecian urns. His enthusiasm for Greek and Roman architecture and sculpture was contagious. I will treasure his intellect and his enthusiasm for sharing his repository of knowledge.

I will forever remember how wonderful he was to his two younger brothers, Adam and Gavin. They recall at ages 10 and nine travelling with Chad to New York to visit me in the hospital. They remember visiting his fraternity at Columbia, thinking how cool it was that there were so many video games in his room. They remember him taking me out of the hospital and taking us all to dinner.

I will cherish his letters from summer camp in the Adirondacks. I will cherish our pack trip to the Tetons, sleeping in the wilderness and fishing on the Snake River. I will never forget his face when I drove him to his first away game at Thayer Academy as a freshman at Noble and Greenough School. The boys on the Thayer team were all powerfully built, and he looked at me and said, “Those guys are really big. How am I going to handle this?” Then, just like that, he looked me in the eye, winked and got out of the car.

When, where and how did he devolve into an addict and alcoholic and lose his job, his home, and his relationship with his siblings due to his raging and violent behavior?

Did his CTE begin when he was 15 or 18 or did it begin when he was younger? What was the tipping point? When did his sometimes-arrogant intellect morph into narcissistic sociopathic behavior?

When did his aggressive behavior frighten us to the point where my other sons did not want me to see him alone? He blamed his addiction on my father who was an alcoholic. He blamed it on the opioids he was prescribed after a football injury at Columbia.

Did he know something was wrong? Was there anything we could have done? Were there warning signs? After enabling him for years, my family suggested I not see him. He continued down the path of his addiction, which became primarily alcohol.

He befriended an elderly woman named Ruby in his neighborhood who used to drag him off the curb after one of his routine binges. She became his substitute mother and tried to get him help to no avail. What were the demons in his brain?

Sadly, by the time he wanted to try to stop drinking and work his way back to recovery, his liver was failing. He bought a fancy juicer and would call me and ask how to make healthy smoothies. He tried to cook and eat healthy, again calling me to talk him through recipes.

We spent last summer trying to get him on a liver transplant list, but his body was not able to recover.  He was in and out of the hospital until he was too weak to be on his own. When the liver fails, everything breaks down and he had to suffer through painful belly drainage every few days as his liver was not able to remove toxic waste.

To the end, he never discussed dying but three days before he passed, as I sat next to his bed, he reached over and brought my head into his chest and hugged me. He said, “I love you.”

He died on a summer afternoon at Massachusetts General Hospital two hours after I kissed him goodbye. I am not sure what made me decide to donate my son’s brain to Boston University’s CTE Center, where researchers diagnosed him with stage 1 CTE. It seemed this would be a way for his life to go on having meaning. But maybe it was also that I wanted to know what happened to bring him to this tragic end. Somehow, I wanted his life and incredible mind to have been for something greater than his death.