Brian Wallach wasn’t supposed to live to see his younger daughter’s first birthday.
Diagnosed with amyotrophic lateral sclerosis (ALS), a terminal disease with no cure, doctors told him in 2017 that he might have six months to live.
Today, he’s focused on being there for his daughter’s future firsts: kindergarten drop-off, middle school dance, wedding day.
More than two years after his diagnosis, he has been lucky, he said, to experience relatively limited progression of his disease. After some balance issues, the Kenilworth resident now uses a cane — or, as he is careful to specify, a “cool walking stick” — to get around.
When Wallach was diagnosed, neither he nor his wife, Sandra Abrevaya, knew much about ALS, a neurodegenerative disease that affects nerve cells in the brain and the spinal cord, eventually paralysing even the body’s ability to breathe.
In response to Wallach’s diagnosis, the couple, both 39, launched I AM ALS in 2019. Former staffers in the Obama White House, they marshalled lessons learned while campaigning — gathering information, forming consensus, considering the impossible possible — to build a force to mobilise hope and change for those facing a disease they say can and should be cured.
Rays of hope are beginning to emerge through an innovative trial that received FDA approval last week to test several drugs at the same time, a bipartisan congressional caucus, doubled federal funding, and support from groups like the Chan Zuckerberg Initiative, which gave the couple’s organisation a $453,000 grant in September.
“Last year we made hope a word that was OK to use,” Wallach said. “This year we have to make hope real.”
Audaciousness is the only option, the couple says, in their race against the clock.
Wallach logged 120,000 miles in the air last year, including travelling to Washington, DC, in April, where he testified before Congress and asked legislators to amp up funding.
“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.’”
Until October, when Wallach fell while exiting a Lyft in Boston after swinging a heavy backpack onto his back. Thirteen staples in his head later, and after terrifying Abrevaya with a phone call, the two agreed he wouldn’t travel alone anymore. He’s maintaining momentum for the cause with more hours in his home office and fewer in airports.
In December, I AM ALS debuted billboards around Times Square as part of its #CuresForAll campaign aimed at informing the public about the impact a cure or better treatment for a neurodegenerative disease can have on other diseases such as multiple sclerosis, Alzheimer’s and Parkinson’s. ALS patients and their families from states including Michigan, Maine and Colorado were in New York for the launch.
The billboards noted the number of people lost to ALS each day — 16 — with photographs of those who died in 2019. Days earlier, Pete Frates, a founder of the viral fundraiser the Ice Bucket Challenge, which raised $115 million, had died. He was 34.
The campaign was also shared on social media. The posts expressed the suffering and loss nationwide: a mother wrote about her son who was diagnosed at 20 and died at 28; a son posted in honour of his dad; Colorado Representative Jason Crow posted a message honouring his cousin.
It’s time, the couple said, to switch ALS conversations from a diagnosis rooted in darkness to the faces of people bravely moving forward. They want to speed development of potential cures and give patients more access to experimental treatments.
That’s not an unreasonable goal, said Sabrina Paganoni, a faculty member at The Sean M Healey & AMG Center for ALS at Mass General in Boston, which plans to test at least five different medications for ALS at the same time, a first for the disease and something she said could be a huge turning point.
Last Wednesday, the Healey Center announced it received FDA approval to move forward with testing the first three drugs: Zilucoplan, Verdiperstat and CNM-Au8. Similar to how cancer drugs are already tested, this gives patients access to more treatments and allows researchers to quickly collect data and accelerate the pace toward a cure.
“This is a very exciting time in the history of ALS,” Paganoni said. “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.”
For years, Steve Perrin, the chief executive officer at the ALS Therapy Development Institute, has monitored clinical trials for ALS. So far, he said, the two drugs approved by the FDA, Radicava and Rilutek, are “a very marginal slowing down of disease.”
This year, he said the quality of drugs going into trials seems improved. He is excited about several trials, including one studying stem cells and another testing a drug to potentially slow progression in some patients.
“As a patient you want to see something measurable, and I don’t mean measurable in days,” he said. “If I’m a patient, I want to see something, and I want hope for myself and my family. I want something that is going to slow the disease down so I can watch my kids growing up, I can watch them graduate from college, I can watch them marry.”
But that takes resources.
“We are in a time when we can reasonably say that there’s going to be new treatments available,” Paganoni said. “But we need more funding and support, so all of this can happen, and happen soon.”
Nearly every moment feels like a push-pull for Wallach and Abrevaya.
Do they spend more precious minutes with their two daughters, ages 4 and 2, or do they spend time away, among strangers — on a plane, in a researcher’s office, walking the halls of Congress — with the hope that those minutes will, someday, result in time banked to create more family memories.
“The hardest balance, if I’m honest, is, I love every minute I have with them,” Wallach said about his daughters, “but I also feel this pressing sense of, I need to be working towards a goal of actually finding a cure.”
“We’re doing that so we have a shot at a real future together,” Abrevaya said about their time spent travelling and advocating.
At home, when the family heads for the door, the toddlers reach for their father’s shoes, and they get his walking stick.
“While that both fills your heart with joy and appreciation, it’s also painful that your toddlers are being put in this position,” Abrevaya said.
The parents guard normalcy. They take their daughters to swim at the neighbourhood pool and on vacation with friends. Wallach wishes he could lift them above his head to touch the ceiling, like their uncle can. But he can lie on the floor and play with them; he can listen to them belt out songs on their purple karaoke machine.
They find ways to lighten a heavy subject. On New Year’s Eve, the two danced in a video on the foundation’s Instagram, singing into hairbrushes, and Wallach promised to get an “ALS: You Gone” tattoo if 20,000 people donated $10 to a Healey Center research fundraiser. It raised $40,000 in 24 hours, Wallach said. No matter the outcome, he plans to get the tattoo.
The couple, who both work full-time jobs — Abrevaya is the president of nonprofit Thrive, Wallach works at law firm Skadden, Arps, Slate, Meagher & Flom — want more research, to create a patient navigation system, and to gather signatures for a letter asking new FDA commissioner Stephen Hahn to speed ALS patients’ access to possible treatments.
And they keep looking for light. But it takes work.
Changing life with ALS for Wallach, and for other patients and their families, requires bold action from people with the power to make change: politicians, researchers, philanthropists.
As they meet others with ALS, they welcome new friends and face the pain of losing some.
“It does make you uniquely urgent in what you do,” Wallach said. “You push because you have to. You push because you know that the time that we have is precious, and that you want to see 20 years from now. And know that you can make that happen.”
Wallach often shares moments about his ALS journey on Twitter with his 40,000 followers. Recently, he shared something he wasn’t sure he should. It was a time he was unable to find light.
On a recent night, he woke up to pain he’s had for the past few months, radiating from his right hip to his right calf.
He clutched a stuffed llama his daughter gave him. And he began to cry.
“I cried because of the pain. I cried because I couldn’t be the father to my girls I dreamed of being,” he wrote. “I cried because I couldn’t be the husband to my wife I dream of being. Because I saw the future zooming ahead, and for a brief moment I wondered if I would be a part of it.”
His wife heard him crying that night. She asked what was wrong. And he said maybe they would be better off if he left, living instead in an assisted living facility. Their daughters, he told her, could have a dad who could do everything he dreamed of doing.
She looked at him in the dark. “You are my light,” she said. “You are their light. The only way you are leaving us is if you die in my arms, and we aren’t going to let that happen for a long, long, long time.”
Finally, he smiled. — Chicago Tribune/TNS