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        • How to Improve Mobility
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        • Dealing with Speech & Swallowing Issues
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        • Clinics and Centers
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Texans Travel to Washington, D.C., to Advocate for People with ALS

May 22, 2018 by Elise Bernard Leave a Comment

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.

[Read more…]

Filed Under: Advocacy Tagged With: advocacy, advocate, als, ALS Advocacy, ALS awareness, ALS Texas, national als advocacy day, Public Policy

Letter from the Executive Director: Year in Review

December 26, 2017 by Tanner Hockensmith 1 Comment

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.

[Read more…]

Filed Under: News Tagged With: advocacy, als, ALS Advocacy, ALS awareness, als clinics, ALS Research, ALS Texas, ALS treatment, Donate, Lou Gehrig's Disease, national als advocacy day, pals, patient services, Public Policy

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

December 6, 2017 by wpengine 3 Comments

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.

[Read more…]

Filed Under: Stories Tagged With: advocacy, advocate, als, ALS Advocacy, als clinics, ALS drug, ALS Research, als stories, ALS Texas, ALS treatment, clinical trial, clinics, diagnosis, disaster relief, Donate, houston, hurricane, Lou Gehrig's Disease, national als advocacy day, pals, patient services, Public Policy, support groups

FDA Approves New ALS Drug

May 5, 2017 by Tanner Hockensmith 3 Comments

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.”

[Read more…]

Filed Under: Research, Research News Tagged With: als, ALS drug, ALS News, ALS Research, ALS Research Update, ALS treatment, FDA, national als advocacy day, Research, research news

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

February 23, 2016 by Mark Murtagh Leave a Comment

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.

[Read more…]

Filed Under: Advocacy, News Tagged With: als, ALS Advocacy, national als advocacy day, Public Policy

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