SAN ANTONIO – A San Antonio ALS patient and advocate made his way into an important film that will be shown this week at SXSW.
KSAT viewers have seen Juan Reyes many times in our newscasts. He’s a local ALS patient who travels nationwide, advocating for ALS research, treatments, and changes in laws.
He will appear in a film about the creation of the already life-changing nonprofit I AM ALS this Sunday at South by Southwest in Austin.
“I’m in the film a few times, where I’m sharing some of my thoughts about ALS and I AM ALS as an organization,” Reyes said.
The organization was founded by Brian Wallach and his wife, Sandra Abrevaya, who met while working for the Obama Administration.
“When Brian was diagnosed with ALS, he came to Sandra with a crazy idea of creating a nonprofit in the hopes of advocating for research and improving the quality of life for ALS persons and their families,” Reyes said.
In just three years, I AM ALS has helped fund crucial research and lobbied to change laws.
“For years, Social Security benefits had a five-month waiting period to receive initial benefits,” Reyes explained. “Five months could mean loss of a home, loss of resources for individuals that are financially devastated by ALS.”
I AM ALS helped get rid of the waiting period.
The organization also helped lobby for the Act for ALS bill, which allows access to experimental treatments for people who do not qualify for clinical trials, which is about 80% of patients.
I AM ALS helped increase government funding for ALS research, especially through the Department of Defense.
“It really is a glimpse at the power that individuals, a small group of people, can make a huge impact,” Reyes said.
He said the film was truly able to capture that determination and success.
Executive producers Katie Couric and Phil Rosenthal added some star power to the documentary.
Rosenthal, who wrote Everybody Loves Raymond and stars in the series Somebody Feed Phil, is open about his mother losing her battle with ALS.
Couric read about Brian Wallach and Sandra Abrevaya’s journey and immediately wanted to get involved.
At a screening of the film in Chicago, Reyes got to meet both Couric and Rosenthal.
“Katie Couric is just a ball of fire, full of energy. Phil is just as approachable and friendly as he comes across on his show,” Reyes said with a smile.
Reyes has watched with excitement as the film garnered attention.
“It’s been receiving high honors and accolades at every film festival that it has been shown at. It seems to be a public favorite wherever it’s shown,” he said.
Reyes believes with so much support, ALS will be cured sooner rather than later.
“Living with ALS takes a lot of effort, energy and logistics. We are keenly aware that a cure or a treatment to stop or halt ALS may not come in our lifetime, but it’s so worth the effort and energy to make that possible for future generations,” Reyes said.
That positivity landed him some big news last week.
Reyes was just accepted as the newest I AM ALS foundation board member.
“They literally have changed the world of ALS,” he said.
So has Reyes, and he’s about to become an even bigger part of it.