I am Sarah Gascoigne
a family member in a familial ALS family,
a family member of someone living with ALS,
a family member of someone we've lost to ALS
Illinois
I went to the doctor and ALS was the last thing on their minds because I was so young.
I grew up knowing my family carried a disease called ALS. In August 2015 ALS hit close to home; my dad was diagnosed. I watched my strong, independent, hardworking father go from farming and doing everything he loved to being completely dependent on others. In June 2018, we lost my dad. ALS took a father, husband, and grandpa.
In October 2019, I ran the Chicago Marathon, a goal I had always hoped to achieve. Following the marathon, I developed a limp and could no longer do my favorite thing, run. I knew something was wrong. I went to the doctor and ALS was the last thing on their minds because I was so young; I was told over and over again it was a running injury. They were wrong, In August of 2020 at the age of 26 and just 5 years after my dad, I received my ALS diagnosis.
At the time of my diagnosis I was scared and hopeless. I didn’t think I would be here much longer. Then I learned the ALS my family faced in the past is not the ALS I would be facing. The ALS world has and continues to move forward and change. Just two weeks after my diagnosis I was enrolled in a clinical trial for SOD1 carriers and I then went on to receive the drug through open label access. Since my diagnosis in 2020 I have had no progression. My life is the same today as it was when I was diagnosed. I get to go to work every day, be an aunt, sister, and friend, learn new hobbies, travel, and plan for my future.
I know I am lucky to have qualified for the drug trial and to be able to receive a drug for SOD1 gene carriers. I know that my story is not the story for everyone. My hope is that my story can bring optimism to others and we can keep moving forward to find not only a treatment, but a cure for ALS.
