By Judith Fales

Most of us have heard of Stephen Hawking, an astrophysicist who, despite being paralyzed due to Amyotrophic Lateral Sclerosis (ALS), worked and did research for over 55 years. In the United States, ALS is commonly referred to as Lou Gehrig disease, in homage to the beloved Yankees baseball star who died from ALS at age 37.

ALS is a fatal disease that causes progressive degeneration of nerve cells in the brain and spinal cord. Symptoms begin in the muscles that control speech and swallowing, or in the hands, arms, legs or feet. People die because they eventually cannot breathe. There is no cure for ALS, and only two FDA-approved drugs slow the disease’s progression.

Recently, I watched the Amazon Prime documentary “For Love and Life: No Ordinary Campaign,” featuring Brian Wallach, a lawyer diagnosed with ALS at age 37, who worked in the Obama administration. After being told that he had only 6 months to live, Brian told his wife Sandra Abrevaya that together they were going to beat the disease, saying, “You choose to curl up in a ball or act.”

When the couple realized how little funding was available for ALS research, they gathered patients, clinicians, families, foundations, the pharmaceutical industry, and politicians to create a movement called “I am ALS.” With funding from the Les Turner ALS Foundation and the Chan Zuckerberg Initiative, “they decided they were going to make a difference,” said former President Barack Obama.

The couple also addressed the fact that the FDA does not approve drugs for final use by humans until they have undergone three levels of testing. Since this takes years, a person experiencing positive results during the first stage of a clinical trial must wait for final approval before continuing the drug. Brian argued that people living with fatal diseases should be able to decide for themselves whether or not to take a drug following its first phase of testing. His appearance before Congress, resulted in their subsequent unanimous passage of the Accelerating Access to Critical Therapies for ALS Act in 2001.

Brian testified before Congress several times to educate and explain the need to fund research to develop treatments for fatal diseases. His efforts helped increase the ALS research budget from $20,000 to $200 million, resulting in new clinical trials, targeted gene therapies, and the development of new drugs by pharmaceutical companies. The couple’s efforts also resulted in the elimination of a waiting period before patients with ALS can receive government benefits. This is particularly important as being unable to work due to ALS frequently bankrupts families.

Brian is still alive, and remains active in I AM ALS. He can now receive drugs that are helping him before their final approval. Sandra says, “If one [therapy] gives you an extra 19 months, then another an extra 6 months, we’re buying ourselves time that’s going to help us to be here for when a curative therapy arrives.”

Learn more about ALS and this amazing documentary at, where you can also make a difference by donating at