Former Obama staffer fights to raise ALS awareness after devastating diagnosis

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• Judy Woodruff:

  When a former Obama campaign staffer was diagnosed with the progressive neurodegenerative disease ALS, he was given six months to live.

  But, five years later, with his wife's help, Brian Wallach is still fighting the disease and raising awareness, in hopes of one day finding a cure.

  Reporter Brandis Friedman has this story from PBS station WTTW in Chicago.

• Brandis Friedman:

  Despite his inability to use almost every limb of his body, Brian Wallach is making no small plans.

• Brian Wallach, Co-Founder, IAMALS.Org (through translator):

  I feel OK. I'm a bit tired, but — from all of the things, but my mind is racing at full speed.

• Brandis Friedman:

  As his wife of nine years, Sandra Abrevaya, translates almost his every word, he shares his thoughts.

• Brian Wallach (through translator):

  I'm thinking about how we do a screening for the I AM ALS community.

• Brandis Friedman:

  The work he wants to accomplish?

• Brian Wallach (through translator):

  I'm thinking about how we improve our care delivery for synaptic care.

• Brandis Friedman:

  And the family he adores.

• Brian Wallach (through translator):

  And I am thinking about our parent-teacher conferences this afternoon.

• Sandra Abrevaya, Co-Founder, IAMALS.Org:

  Wait. Where's — where am I in this equation?

  (LAUGHTER)

• Brandis Friedman:

  It's his way of responding to his illness, which may have slowed his body, but not his mind.

• Brian Wallach (through translator):

  With every stressful situation, my response is to go to work. And I do that because it gives me a sense of purpose that ALS is trying to take away.

  And it also gives me a sense of power, when I have no control of the disease. So, for me, I want to go to work because it allows me to say, not today, ALS.

  Barack Obama, Former President of the United States: I stand before you today to announce my candidacy.

• Brandis Friedman:

  Brian and Sandra met working on Barack Obama's historic 2008 presidential campaign. Brian says he and Sandra applied that organizing know-how to their fight against ALS.

  Much of their journey is documented in the film "No Ordinary Campaign."

• Brian Wallach:

  Sandra has described me as a golden retriever who sees a bright shiny object and runs at it. And this was a bright shiny object that I had to run at.

• Brandis Friedman:

  First, the pair started the nonprofit I AM ALS with the support of a number of medical professionals and colleagues.

  Next, they took the fight from here in Chicago to their old stomping ground.

• Sandra Abrevaya:

  It's 8:17. Cutting it close for an 8:30 a.m. meeting.

• Brandis Friedman:

  Between 2019 and 2021, they successfully lobbied Congress to increase government spending on ALS research from $10 million to $80 million a year. They also convinced Congress to pass legislation allowing people with ALS immediate access to benefits from Social Security without the requisite five-month waiting period, a time window that can close quickly on an illness like ALS.

  Next, the group push the Food and Drug Administration to allow patients earlier access to promising, but experimental drug treatments.

• Brian Wallach (through translator):

  So, if you can take one treatment, and slow down your progression by 20 percent, and then take another treatment, and slow it down by 10 percent, you have taken a disease that most people pass away from in two to three years, and make it a disease where people can live seven to 10 years. And that is everything.

  And that is how we end ALS.

• Brandis Friedman:

  Along the way, journalist Katie Couric joined their list of supporters, becoming an executive producer on the film. She's also someone who knows what it's like to care for a husband facing a terminal illness.

• Katie Couric, Journalist:

  What's really tough is, when you have a debilitating illness like ALS, there are few survivors. So, you don't have a built-in network of people who are advocating.

  But they have built a network. And they have just brought together this whole community. And whatever happens, this community is going to keep fighting.

• Brandis Friedman:

  And every victory has given Brian and Sandra hope that they can do more than beat the odds.

• Sandra Abrevaya:

  I think Brian and I still do authentically believe we have a chance to survive it.

• Brandis Friedman:

  A chance for survival and a chance that Brian can see his two daughters grow up.

• Brian Wallach (through translator):

  Well, I want to be there to share with them how we fought and how we made ALS a disease that people can live with, because I know that they will grow up to be incredible people. And I want to be here to see that.

• Sandra Abrevaya:

  Oh, are you saying: "I have a lot more bad dad jokes to tell"?

  (LAUGHTER)

• Brandis Friedman:

  Despite the odds, these two believe the fight for their own family will make a difference for many others.

  For the "PBS NewsHour," I'm Brandis Friedman in Chicago.

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