It’s no secret that amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a devastating illness. For the estimated 31,000 Americans living with the degenerative neurological disease, there is seemingly no cause — and currently, no true cure.
But in an interview with Cure, Nicholas Boulis, MD, Cofounder and President of the biotech Brain Trust Bio, suggests that we expand the definition of what “cure” means. “The term cure means that you will not die of a disease," Boulis said. "Frankly, it means that the disease will cease to be a problem for you to be cured."
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, causing muscle cramping, loss of motor control, tripping and falling, fatigue, slurred speech and other symptoms. Traditionally deemed incurable, ALS has been a focal point for intense research aiming to extend and enhance the quality of life for patients.
At Brain Trust Bio, Boulis and his colleagues are working to develop new ways to deliver nervous system drugs, like those that could be used to treat ALS, into the body. Those drugs, however, still need to be made.
One day, however, Boulis envisions a future for patients with ALS that is similar to what patients with HIV now experience. He highlighted how a combination of treatments, none of which could singularly cure AIDS, has led to effective management strategies that allow patients to lead productive lives. And while the current treatments cannot eradicate the disease completely, they can alleviate the condition's impact on patients' lives. “It’s patients that we know are not ‘cured,’ but they are living productive, meaningful lives,” he said. “I’m willing to accept longer, high-quality survival.”
Boulis also spoke about the inspiration he draws from patients with ALS, whose resilience and determination fuel his commitment to his work. Referencing Mitch Albom’s book Tuesdays with Morrie, a popular memoir documenting the life lessons from a former professor living with ALS, Boulis expressed a deep admiration for the courage displayed by individuals affected by ALS.
For Boulis, extending the lives of patients with ALS with quality and dignity is paramount. "If I was a family member of one of those individuals, or one of those individuals [diagnosed with ALS] I would want more time and more strength to start with," said Boulis, underscoring the urgent need for continued research and development in ALS treatments.