The I AM ALS co-founder talks dream seatmates and tips for traveling in a wheelchair
What do you do for a living?
I’m a lawyer, advocate, and entrepreneur. In 2017, when I was diagnosed with ALS, I was an Assistant United States Attorney. After my diagnosis, I returned to my law firm, Skadden, Arps, and have been practicing there ever since. In 2019, my wife, Sandra [Abrevaya], and I launched I AM ALS, which quickly grew into the most effective advocacy organization in the ALS community, with leaders like U.S. Senators Richard Durbin and Lisa Murkowski helping us increase federal funding for ALS research by more than $600 million. In 2021, we built Synapticure, which is the first national virtual clinic for people living with neurodegenerative diseases.
You helped get the Accelerating Access to Critical Therapies for ALS Act signed into law in 2021. How did that feel?
I helped write the bill with Congressman Mike Quigley to address a dire need among ALS patients: providing expanded access to promising therapies for the 90 percent of people living with ALS that do not qualify for clinical trials. At first, I was in shock that it passed by unanimous consent, which means that no one opposed the bill. My shock quickly gave way to joy and excitement.
Last year you released your documentary, No Ordinary Campaign, and traveled to many film festivals. Any highlights from the festival circuit?
Festival after festival, the audience gave standing ovations. Before our showing at South by Southwest, the Obama Foundation had an event at the historic Arlyn Studios. Katie Couric was with us, and Rachel Platten played one of the most amazing sets of music I have ever heard. To top it off, President Obama came to the event and spoke to the crowd about how proud he was of the work that we were doing.
Any tips for traveling with a wheelchair?
We arrive at the airport two hours before boarding so that we do not have to feel rushed. Sandra and I both have TSA PreCheck, which I highly recommend to anyone traveling in a wheelchair. About half an hour before boarding, we go up to the gate agent to do the paperwork for my wheelchair and to confirm the aisle chair assist is coming to help me. We have found that the United agents are really helpful and kind. In particular, Souhier Boutros and Steve Hobbs on the United team in Chicago have gone out of their way to make travel as smooth and as enjoyable as possible for us.
What’s the most meaningful trip you’ve taken?
Two years ago, our family went to Steamboat Springs, Colorado. Before ALS, I was an avid skier, and this was the first time I was able to do adaptive skiing. The adaptive ski program, Steamboat STARS, is amazing and allowed me to have the sensation of skiing again—and to ski with my daughters for the first time.
What place is at the top of your bucket list?
It’s a tie between Japan, Cape Town, and Buenos Aires. Each of these places has so much history and so much natural beauty that is unlike anything I have seen before.
Which famous person, living or dead, would be your dream seatmate?
Franklin Delano Roosevelt or Dr. Martin Luther King Jr. Both of them led such incredible lives. I would love to hear from them directly, as their work has shaped so much of the world I live in.
