CHICAGO — After one of them was diagnosed with ALS, a married pair of political insiders are taking on a new mission: starting a movement to unlock the mysteries of the disease, in hopes of revealing cures for other neurodegenerative ailments as well.
For years, Brian Wallach and his wife Sandra Abrevya worked behind the scenes, trying to get America’s first black president, Barack Obama, elected in 2008. Through grueling campaign days and subsequent stints at the White House, they found purpose in their work and fell in love along the way.
Then Wallach was diagnosed with amyotrophic lateral sclerosis (ALS) at 37. Right now, the average life expectancy for patients is just two to five years. There are few patient advocates because the disease progresses so rapidly. The lawyer, husband and father to two very young daughters was devastated.
Still reeling from his diagnosis, a confidante suggested there could be a reason it happened to Wallach, that someone with his public speaking experience and network could use their talents to change the future of the disease.
Brian decided to accept the challenge, and the “I AM ALS” movement was born six months ago. As part of their work, Wallach hopes to pave the way for the first person to survive the disease— even if it's someone else.
“I would love to be around to see our girls graduate high school, college, dance at their weddings," Wallach said. "But I also want to make sure we can say we were part of funding that first ALS survivor.”
Roughly 30,000 people are living with ALS in the United States right now, yet it's still considered rare and there here is no cure. The lesser-known nervous system disease got a lot of unexpected attention when the “Ice Bucket Challenge” went viral, raising over $200 million globally.
After surrounding themselves with political powerhouses over the years, Wallach and Abrevya are now working with them to keep it in the limelight, and make a difference in defeating the deadly disease. They're marching to the nation’s capital together, testifying before committees and meeting with politicians to beg for more funding.
His mission is message driven, focused on fundraising so scientists can one day soon find a cocktail for ALS, MS , Parkinson's and others the way they found a cocktail for HIV. Science suggests the cures are linked.
"What we have discovered in the last year and a half, there are a lot of connections between the fight against ALS, Alzheimer's, Parkinson's, MS... dementia and beyond," Wallach said. "Once you connect them we will find cures faster, once your connect them, you will see what is going on in one area will impact another area. That is a truly transformative moment.”
Wallach is starting his own movement by uniquely joining these diseases for the first time, asking Washington for twice the funding for ALS than it has received in the past, fighting for his own life at the same time.
"Imagine your son or daughter was told they had two to five years to live... as their parent, what mountain would you move, how creative would you get, what lever would you pull what magic would you make happen if you were in that position?" Abrevya said. "That’s the kind of energy we’re talking about.”
He already has the attention of former president Barack Obama. Wallach and his wife helped Obama get elected, and now he and others are trying to help Wallach find a cure for ALS.
Wallach said of the people diagnosed on the same day as he was, one third of them have already passed away, but the progression of his disease has been slower for some reason. While his speech is deteriorating, he is working out three times a week and raising his small children at the same time. He’s still working full time "causing trouble," as he says.
"When you see our story, don’t feel bad for us, join us," Wallach said. "Be a part of finding the solution here, help us rewrite the story because you can.”
For the Encyclopedia of ALS Organizations visit I AM ALS' website.