San Antonio ALS patient to be featured in film about new ALS defense fund at SXSW

SAN ANTONIO – An ALS patient and lawyer from San Antonio starred in an important film screening this week at SXSW.

KSAT viewers have seen Juan Reyes many times on our newscasts. He is a local ALS patient who travels the country advocating research, treatment and legal change for ALS.

He will appear in a film about the founding of already life-changing nonprofit I AM ALS this Sunday at South by Southwest in Austin.

“I make several appearances in the film where I share my thoughts about ALS and how I AM ALS as an organization,” Reyes said.

The organization was founded by Brian Wallach and his wife Sandra Abrevaya, who met while serving in the Obama administration.

“When Brian was diagnosed with ALS, he came to Sandra with the crazy idea of ​​starting a non-profit organization in the hope of supporting research and improving the quality of life for people with ALS and their families,” Reyes said.

In just three years, I AM ALS helped fund important research and lobbied for changes in laws.

“For years, Social Security benefits had a five-month waiting period for initial benefits,” Reyes explained. “Five months could mean the loss of a home, the loss of resources for people who are financially devastated by ALS.”

I AM ALS helped get rid of the waiting period.

The organization also helped lobby for the ALS bill, which allows access to experimental treatments for people who are not eligible for clinical trials, about 80% of patients.

I AM ALS has helped increase public funding for ALS research, especially through the Department of Defense.

“It’s really a glimpse of a power that individuals, a small group of people, can have a huge impact on,” Reyes said.

He said the film was truly able to capture that determination and success.

Executive producers Katie Couric and Phil Rosenthal added to the documentary’s fame.

Rosenthal, who wrote Everybody Loves Raymond and starred in Somebody Feed Phil, is open about his mother’s losing battle with ALS.

Couric read about the journey of Brian Wallach and Sandra Abrevaya and immediately wanted to get involved.

At a screening of the film in Chicago, Reyes met Couric and Rosenthal.

“Katie Couric is just a fireball full of energy. Phil is as approachable and friendly as he is on his show,” Reyes said with a smile.

Reyes watched with excitement as the film drew attention.

“It received high awards and accolades at every film festival where it was shown. It seems to be popular with the public wherever it is shown,” he said.

Reyes believes that with such support, ALS will be cured sooner rather than later.

“Living with ALS requires a lot of effort, energy and logistics. We are well aware that a drug or treatment that can stop or stop ALS may not appear in our lifetime, but it is worth the effort and energy to make this possible for future generations,” said Reyes.

This positive attitude brought him important news last week.

Reyes has just become the new board member of the I AM ALS Foundation.

“They literally changed the ALS world,” he said.

So is Reyes, and he will be an even bigger part of it.

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