Tucker T. Olson's
Familial ALS Story
Below is Tucker Olson’s personal story about his family's battle against familial ALS, Tucker's journey of having genetic testing done, and how receiving a positive genetic testing result has affected his life.
Tucker Olson, July 2020
Beginning of Familial ALS Battle: Tucker's Grandmother, Olympia Olson
Richard and Olympia Olson
Richard and Olympia Olson, April 18th, 1943
When Tucker was born on October 31st, 1990 in Fort Wayne, IN, his paternal grandmother Olympia (Derloshon) Olson was suffering from ALS after being diagnosed with the disease in 1988 at the age of 66. Around the time of her diagnosis, Olympia began having problems with the weakening of her legs and balance. Doctors believed she needed surgery on her spinal cord to relieve “pinched” nerves in one of her discs. After much rehab, there was no progress. After a second surgery on another disc and still no progress, her doctor sent her to the Mayo Clinic in Rochester, MN. It was there that she was diagnosed with Amyotrophic Lateral Sclerosis (ALS). Olympia would succumb to the disease less than four years after Tucker’s birth, passing away on April 26th, 1994.
Richard and Olympia Olson
Olympia Olson, 1994
Olympia Olson, est. ~1943
Discovery of Familial ALS: Tucker's Uncle, John Olson
At the point of Olympia Olson’s passing, Tucker’s father, Richard "Rick" Olson, and Rick’s ten brothers and sisters were under the belief that their mother’s disease was random, otherwise known as sporadic ALS. Less than ten years later, Tucker’s uncle, John Olson, was diagnosed with ALS. It was then discovered his grandmother did not suffer from sporadic ALS but instead suffered from familial ALS (fALS). This meant Tucker’s father and each of his father’s ten siblings had a 50% chance of inheriting the mutated gene at their births that causes ALS, that mutated gene being the SOD1 gene (c.435G>C p.Leu145Phe variant; referred to as L144f).
John Olson was the first member of the Olson family to bravely volunteer for an ALS clinical trial. The trial's treatment in which John Olson received was never disclosed to the Olson family. John and other participants were abruptly pulled from the treatment.
John Olson would succumb to complications of ALS in April of 2005, leaving his brothers, sisters, and the rest of his family wondering whom this terrible disease might strike next.
John Olson's Family, 1992
Top, Left to Right: John, Chad, Eric
Bottom, Left to Right: Andrew, Adam, Richard B., Olympia, Jan
John and Jan Olson
Familial ALS Continues to Strike: Tucker's Father, Rick Olson
Rick and Elise Olson's wedding, July 15th, 1989
Rick Olson with his friends and family
In December of 2007, Tucker’s mother and father sat him and his two sisters down at the family dinner table to break the news that their father Rick had been diagnosed with ALS at the age of forty-nine (49). His life expectancy was three to five years.
Richard "Rick" Olson was the second member of the Olson family to volunteer for an ALS clinical trial. In fact, Richard was a participant in the first trial designed to reduce SOD1 levels found within the spinal cord. The trial in which he participated in utilized a medication named Pyrimethamine, which was originally developed to treat Malaria but was found to also reduce SOD1 levels. Rick's family was told the treatment may have extended Rick's life by three months.
Richard "Rick" Olson passed away five and a half years later in May of 2013 due to complications caused by ALS. A few of Rick’s favorite hobbies were fishing, watching NASCAR, playing Santa each Christmas, and of course spending time with his family.
Shortly before Rick’s passing, his oldest child, Kristen (Olson) Stewart, decided to undergo genetic testing to determine whether or not she inherited the SOD1 mutation that has been causing ALS within her family. Unfortunately, the results indicated that she inherited the genetic mutation.
Rick Olson and his youngest child,
Rick Olson and his son, Tucker Olson
Rick Olson and his two oldest children, Kristen (Olson) Stewart and Tucker Olson; weeks before Rick's death to ALS (May 2013)
Rick Olson's High School Senior Picture
Rick Olson, Olympia Olson, and Tucker Olson at Parkview Hospital (Ft. Wayne, IN) Oct. 31st, 1990
(Left) Rick's nephew Chad Olson, (center) Rick Olson, (right) Rick's daughter Kristen (Olson) Stewart
Rick and Elise Olson's Family, 2008
Familial ALS Claims Another Victim: Tucker's Aunt, Patricia Olson-Rivera
In the summer of 2017, the youngest of Tucker’s aunts and uncles, Patricia Olson, began experiencing weakness. By the fall, she had been diagnosed with fALS. Patricia would battle the disease until July of 2018 before passing due to complications caused by it.
Patti Olson would leave behind her son Daniel Olson and daughter Elisia Rivera.
Patti Olson and her children, Daniel and Elisia
Patti and her daughter Elisia
Familial ALS Genetic Testing: Tucker Olson's Journey
2019 ALS Advocacy Conference
Left to Right: Sunny Brous, Jaci Dingler, and Tucker Olson
Tucker Olson and Pat Quinn at the 2019 ALS Advocacy Conference. Pat Quinn was the co-founder of the ALS Ice Bucket Challenge
While Tucker’s Aunt Patricia was undergoing the diagnosis process for ALS in Fall 2017, Tucker decided to begin the process of undergoing genetic testing after debating the topic for many years. First, he scheduled an appointment with a genetic counselor. While waiting for this appointment, Tucker contacted a life insurance company in order to take out a life insurance policy he felt would be adequate for a future family that he desires to have someday; knowing a policy would be next to impossible (or unaffordable) to acquire in the event the testing results were to indicate his inheritance of the SOD1 mutation. While working in Indianapolis in December of 2017, Tucker received a phone call from Riley’s Children Hospital informing him his genetic testing results have been received and that he would need to visit the hospital in order to learn the results. It was during this visit Tucker learned he too inherited the SOD1 mutation that causes ALS.
Since his father’s diagnosis, Tucker had been provided inconsistent and conflicting information regarding the likelihood of disease development if the inheritance of the mutated SOD1 gene occurred. It wasn’t until the summer of 2020 before he was provided evidence that the SOD1 variant he inherited is considered to have ‘complete penetrance’. This means all individuals who inherit the genetic mutation are affected by the disease. The average age of onset for this specific mutation’s variant is 49 years old. Since receiving his genetic testing results in 2017, Tucker has been an active volunteer participant in familial ALS research studies by donating his time and specimen (spinal taps, EMGs, brain MRIs, cognitive exams, etc.) to help develop biomarkers for ALS so that it can be earlier detected for fALS and sporadic ALS patients; ultimately resulting in earlier treatment availability and thus, potentially longer life expectancy.
John Schroeder, Tucker Olson, and Tina Ketzel at Capitol Hill prior to meeting with Indiana Senate Legislators.
(ALS Advocacy Conference, June 2019)
In October of 2020, Tucker Olson and another individual who has tested positive for a familial ALS causing genetic mutation, that individual being Daniel Barvin, were guests on the I'm Dying to Tell You podcast series. You can listen to them share their stories here!
The Olson Family
Below is a photograph captured shortly after Tucker's Grandmother Olympia Olson's ALS diagnosis. Olympia desired a photograph with all of her direct descendants before her passing. All Olson family members who have passed away from familial ALS or have received a positive genetic testing result for the SOD1 mutation are notated within the photograph.
The Olson ALS Foundation
After John Olson’s diagnosis, Tucker’s aunts, uncles, and cousins started the Olson ALS Foundation. The organization is a 501(c)(3) dedicated to assisting Worldwide efforts of Organizations, Affiliates, and families to raise funds for research to advance treatments and a cure for ALS. The organization does not pay salaries to any of its members and all monies fundraiser are allocated to organizations contributing to researching cures and treatments for ALS.
Due to COVID-19 restrictions, the Olson family was unable to host what would have been their 19th annual fundraiser this year, which consists of a golf outing, dinner, silent auction, and live auction. The Olson family is looking forward to continuing their fundraising efforts during the 2021 fiscal year and are recruiting volunteers to assist our efforts in the Fort Wayne, Indiana market.