For Brian Wallach and Sandra Abrevaya, it was a relationship pulled straight from the plot of a TV show that took them all the way to the halls of the White House. “We met in 2008 while we were both working on the Obama campaign. I was the political director in New Hampshire during the general election and Sandra was the communications director. We started dating halfway through the campaign and the rest, as they say, is history,” says Brian.
After their time in Washington DC, Brian and Sandra moved home and began new endeavors in Chicago. Sandra became President and Chief Impact Officer at Thrive Chicago, an organization that connects Chicago youth with job opportunities, and Brian practiced law at Skadden, Arps, Slate, Meagher & Flom LLP.
Then, at just 37, Brian was diagnosed with ALS. With two daughters under the age of 3, Brian and Sandra made the choice to take the bad with the good. The family has banded together to tackle this journey, “ALS has changed every facet of our lives,” says Brian.
“I changed jobs, we moved into a new house that we renovated to accommodate the realities of ALS, and, of course, we started I AM ALS. It has also brought us back in close touch with many family members and friends who have enriched our lives for years, who are helping us embrace and celebrate the now. Too often with ALS and similar diseases, you spend all of your time trying to figure out what is next. We do that too, but also try to embrace the little moments in every day as well that make life amazing.”
Shortly after his diagnosis, Brian approached the Les Turner ALS Foundation to be the fiscal sponsor for a bold new idea. I AM ALS, a patient-led, patient-centric movement launched in January 2019! In response to its success so far, Brian and Sandra are filled with, “gratitude, hope and a drive to act and make change real.”
I AM ALS has hit the ground running to raise awareness and advocate for the disease. According to Brian and Sandra, their goals are threefold.
“We want to get to a place where, similar to a disease like HIV, everyone knows what the disease is and what the diagnosis means for individuals and their families.
We want to build an empowered community that is taking steps, large and small, in the fight to end this disease. From helping push for real legislative change, to galvanizing your block or your community to take action in this fight, to supporting other people and families living with ALS, we are working to build a community that reflects and engages you, allowing you to be part of this movement for change.
We want to meet people where they are in this fight and to connect them to the amazing groups out there just waiting to help them. Organizations like the Les Turner ALS Foundation have developed incredible resources for people living with ALS throughout the years and we want to help drive people to those resources.”
As a man born “with hope in his veins” Brian is embracing the momentum of I AM ALS. “Most people don’t know that the fight against ALS is at an amazing inflection point. Research is exploding and with the right amount of funding and focus, we can finally defeat ALS.”
When asked what gives him hope each and every day, his answer was simple, “You. Everyone reading this newsletter. You are amazing, inspiring and together, we are going to win this fight.”
In honor of ALS Awareness Month, the Les Turner ALS Foundation partnered with I AM ALS and other ALS organizations on a campaign called “You Shop, We Give” to raise awareness and drive funding for research and care with local Chicagoland businesses. <<Find and support the participating stores in your community
