In 2014, Stephen Fray faced a life-changing moment when his mother was diagnosed with Familial Amyotrophic Lateral Sclerosis (ALS), a rare progressive neurodegenerative disease that affects 10 percent of the ALS population and .08 percent of Black Americans. Little did they know that this diagnosis would set the stage for Fray’s own battle with ALS later on.
The Fray Family’s ALS Experience
The family, including Fray and his sister, became caregivers as their mother navigated the challenging terrain of ALS. Fray’s mother, who was diagnosed at 81 stayed with the family for five years, surpassing the initial prognosis of two to three years.
In the final years, both of Fray’s parents battled health issues simultaneously, adding emotional strain to an already difficult situation.
“Toward the end it really began to take a toll on everybody,” Fray shares. “If I could go back 10 years ago, back to 2014 when my mother was diagnosed, I would have been more involved. I wish I’d known before because there’s a lot of things that need to be addressed with ALS.”
Personal Revelation and Diagnosis
Fray’s own journey with ALS began with a sudden realization during a ski trip in Utah. Struggling on the slopes, Fray, who describes himself as morbidly obese at the time, initially attributed it to orthopedic issues but soon discovered it was a symptom of something more profound.
Upon consulting a neurologist, he underwent an electromyography (EMG) test, the key to diagnosing ALS.
“The results came back the very next day and the doctor said I’m referring you to the ALS clinic,” Fray recalls. “I called to make an appointment with the clinic, which happened to be the same clinic that my mother went to,” Fray shares adding that because of this he was able to get an appointment immediately.
Genetic Testing Unravels Familial ALS
The ALS clinic not only confirmed Fray’s diagnosis but also initiated genetic testing due to the family’s extensive history with the disease. Fray discovered he carried the mutated gene responsible for familial ALS. Unfortunately, genetic testing was not conducted for his mother, leaving uncertainty about hereditary ALS. The genetic link extended further in the family, with Fray’s cousin also testing positive for the mutated gene.
Advocacy for ALS Awareness
Armed with knowledge, Fray became an advocate for ALS awareness, emphasizing the critical need for