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Texans Travel to Washington, D.C., to Advocate for People with ALS

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Twenty-two Texans traveled to Washington, D.C., in May to attend the National ALS Advocacy Conference.

More than 570 ALS advocates from across the country joined together for the 2018 National ALS Advocacy Conference in Washington, D.C., on May 13-15. Nearly every state in the country was represented, with 22 advocates hailing from Texas.

Stacey Crowder was one of the Texans who went to D.C. to advocate for People with ALS. Stacey was diagnosed with ALS on August 11, 2016. He’d first noticed a slight twinge in his left bicep earlier that year, and when he received an ALS diagnosis, it took him and his family on an emotional roller coaster. At first, Stacey was devastated and scared, but he was able to cope by relying on his spirituality and the support of his friends and family.

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Letter from the Executive Director: Year in Review

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Executive Director Tanner Hockensmith and his family

Texas is big, really big. Our friends at Texas Humor stated that “if you drive long enough through Texas, you still might not get all the way through it.” As Texans, we pride ourselves on the sheer size of our great state.

However, its sprawling cities, growing suburbs, and vast rural areas pose a real challenge when we think about access. At ALS Texas, we believe that everyone living with ALS deserves to have access to top-notch clinical care, programs and resources that increase quality of life, clinical research studies, and an ALS community advocating for change.

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Offering Help, Hope, and a Voice to those Living with ALS

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By John Quinn

John and his family

Like many people with ALS, I first noticed symptoms several months before I was diagnosed. In December 2015, I was dropping my right foot when I walked and began fatiguing more easily than normal.

I went to multiple doctors and finally saw a neurologist who suspected I had ALS, and he recommended I go to Houston Methodist hospital. In May 2016, I went through a series of tests for two days at Houston Methodist hospital and was given an ALS diagnosis.

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FDA Approves New ALS Drug

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Radicava is First Approved Treatment for ALS in Decades

The Food and Drug Administration’s (FDA) announced today that it has approved Radicava (edaravone), the first new treatment approved specifically for ALS in 22 years. The FDA approved Radicava less than a year after Mitsubishi Tanabe Pharma Corporation submitted a New Drug Application. The only other approved treatment specifically for ALS, riluzole, was approved in 1995.

“We thank the FDA and MT Pharma for working together to expedite the approval of the first new ALS-specific treatment in decades,” said Barbara Newhouse, president and CEO of The ALS Association. “We hope today’s announcement signals the beginning of a new chapter in the fight against this terrible disease. There are several drugs to treat ALS currently in clinical trials and we are hopeful that people living with ALS have even more therapies available to them sooner rather than later.”

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Calling All Texas Advocates for the 2016 National ALS Advocacy Day & Public Policy Conference

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National ALS Advocacy Day 2016
In 2015, The ALS Association of Texas took its largest contingency of advocates ever to Washington, DC to lobby congressional leaders to make ALS research and services to people living with ALS a priority. If you’ve never before participated in this important and powerful event, we are pleased to announce that registration for the 2016 National ALS Advocacy Day & Public Policy Conference is officially open!

Held this year from Sunday, May 8 through Tuesday, May 10, in Washington, DC, National Advocacy Day is a great opportunity to share your story with Washington, DC legislators as well as other advocates. Registration is open to everyone, so don’t let this opportunity to have your voice heard pass you by.

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