As originally reported in ArcaMax, when you get a diagnosis for a terminal rare disease, a wave of emotions crashes over life. Brian Wallach emerged clutching ‘hope.’
In 2017, Brian, father of two todders, learned of his diagnosis with amyotrophic lateral sclerosis (ALS). He wasn’t very familiar with the disease prior, but understood now it might mean he would not live to his youngest’s first birthday or any of her life firsts: school, job, romance. He was told he had six months left to live. It led him to dedicate his whatever time he had left to being fully appreciative of his daughter’s first years while fervently pursuing a cure.
Amyotrophic Lateral Sclerosis
Amyotrophic lateral sclerosis is a rare neurological disorder that damages the nerve cells in the spinal cord, brain, and brain stem, killing connections between these vital organs. Nerve cells are critical for communication within the body because their characteristic electric signals make up the core of the central nervous system. Without them, the progressive disease eventually paralyzes the patient’s ability to breathe.
The disorder became more commonly known because of the viral ALS ice bucket challenge, a memorable moment on the internet that spread awareness about the disorder through videos on social media of people pouring buckets of ice over their heads. This success of the campaign was not only in educating the public, but the $220 million dollar of fundraising paid off. ALS had real progress as a result, including the discovery of a gene linked to the disorder. There are also many experimental drugs in trials, giving hope to the community.
Wallach’s Campaign Efforts
Wallach had confidence in his own ability. Him and his wife Sandra Abreyava had been staffers in the Obama white house, and they took these organizational skills to the disease battle front. Wallach describes dedicating his time thereon to any meetings he could get. He told ArcaMax,
“Last year, every time someone said, ‘Do you want to speak to us?’ I said, ‘yes.’ Every time someone said, ‘There’s a meeting,’ I said, ‘I’m going.'” he said. “Every time there was anything, I said, ‘Great, I’m on the plane.'”
He eventually lost the mobility to travel like this, but this did not stop his campaigning efforts. Wallach and his wife took their high level campaigning skills to build the I AM ALS campaign in 2019, an effort that took collaboration and extensive information gathering in order to build realistic hope that the disease could be tackled once and for all. They even had billboards in Times Square that read ‘I AM ALS’, featuring the disorder in the #CuresForAll campaign, bringing public awareness to various neurodegenerative diseases.
The couple have treatments and cures as their goal and they believe that research and patient access to what’s in the works could be sped up. Doctors think this is possible too with the five experimental ALS drugs currently in trials, giving hope this is a potential tipping point to change.
“This is a very exciting time in the history of ALS,” Sabrina Paganoni, a researcher for ALS at Boston’s Mass General Hospital, said to ArcaMax. “I think this is going to be the decade when ALS is changed from a rapidly fatal disease to a more chronic disease that we can manage.”
Wallach and Abrevaya continue to live busy lives as they fight for a cure. Abrevaya is the president of a non-profit and Wallach works at a lawfirm. His health is still deteriorating though. They describe how their two little girls have had to get used to their dad moving around with a cane and not being able to lift them up. He still can have them lay down on top of him and sing karaoke. He wants to soak in every moment possible, but he also knows he has a chance for a cure, and he’s going to fight for it.
