At first, the signs were easy to brush aside, Brian Wallach recalls.
“For me, the first symptom was actually a weakness in my left hand, and like any 37-year-old guy, I totally ignored that for a while,” Wallach, now 39, tells PEOPLE of the first signs that his body was being affected by a deadly disease.
Wallach and his wife, Sandra Abrevaya, had just welcomed their second daughter together, and shortly after, she noticed he had developed a persistent cough.
“While we were at the hospital, my wife noticed that I caught a cough, so she sent me to the doctor to have that cough looked at,” he says. “She has also trained me really well to tell the doctor every malady I was suffering. So I mentioned to him that I had had this weird cramping and weakness in my left hand.”
Initially, the doctor didn’t think much of it. But then he took his shirt off for the examination.
“He saw that all of the muscle in my left arm was twitching and that, for him, was enough of a sign that there was something bigger going on here from a neurological perspective,” says Wallach, who lives in Chicago.
Though it would take a few months for the diagnosis to be confirmed, Wallach’s doctors were confident enough that he was exhibiting the first signs of amyotrophic lateral sclerosis, or ALS.
The disease is as debilitating as it is rare. Like Wallach, patients first experience twitching or weakness in a limb, followed by slurred speech. According to the Mayo Clinic, because the disease affects the nerve cells in the brain and spine that control muscle movement, patients slowly lose their ability to speak, eat, walk, and breathe on their own. There’s no cure for the disease, which typically claims the lives of those who are diagnosed with it within three to five years.
ALS has recently gained awareness in the public thanks to movements like 2014’s Ice Bucket Challenge. At the time, that viral campaign was all Wallach knew about the disease that would soon influence nearly every aspect of his life.
“It was probably the most difficult thing in my life. I was kind of processing it outside of myself because you had to think: how could this be happening?” explains Wallach, who says his family has no history of ALS.
“I got home and my wife knew that something was wrong, so I explained to her what ALS was and I think the first thing you do in a moment like that is you just cry,” he adds. “You know, you’re 37. You see a whole life in front of you and now all of a sudden that life may not exist.”
Wallach — who campaigned for President Barack Obama during his first run for president and later worked in the White House under his administration — soon got to work, using his skills to raise funds for ALS research that will hopefully lead to a cure.
Earlier this year, he and his wife launched I Am ALS, which aims to create a community of support for people who are diagnosed while raising awareness and funds for research.
“People are being diagnosed and being told they have no hope,” Wallach says. “We have to find a way to create a world community that surrounds them with hope, then actually do more than that.”
To help with their efforts, the Chan Zuckerberg Initiative — helmed by Facebook founder Mark Zuckerberg and his wife Priscilla Chan — have recently pledged $450,000 toward I Am ALS.
“Bringing in groups like that, that have the capacity to really impact change on a large scale level is just an amazing thing,” Wallach says of the impact the large donation will have. “Our focus is on ALS out of the gate, but we hope that with their involvement we can build a model that every other group can use.”
“That’s why we’re so grateful for the Chan Zuckerberg Initiative for being a part of this,” he adds. “Every piece brings us closer to the ultimate solution to this issue, treatment, so 10 years, 20 years down the road we can change the world.”
Today, Wallach can still walk but has a pronounced limp. His voice has weakened, along with his arms, which has made him hesitant about carrying his daughters.
“I will end up in a wheelchair first and will have to make choices to whether or not have a feeding tube placed and have a tracheotomy down the road. You live with that in the back of the mind, which makes you enjoy every moment but also be aware of the frailty of who we are and what our bodies do,” Wallach says.
Despite what the future may have in store, Wallach is fighting for the chance someone else years from now could be spared from what he and his family have gone through since his diagnosis. With this donation, his organization may be one step closer to that day. Until then, he hopes to rally more people behind the cause.
“Often, where someone’s gone through a life-changing experience like ALS, the natural reaction is to have sympathy or pity. What we would like to engender is this can happen to all of us or any of us, so we’re all in this together,” he says. “Don’t feel bad for us, join us, and help make this thing a relic of the past, because we can make that happen.”
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