ALS Texas

ALS Advocacy in Glasgow: One Advocate’s Experience at the 29th International Symposium on ALS/MND

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On December 4th, 2018 ALS Advocate Sunny Erasmus  joined scientists, health care professionals, and other fellow PALS as they made their way to Glasgow, Scotland for the 29th international symposium on ALS/MND. During the 5-day symposium attendees and speakers shared information on the latest research, discussed future collaborations, and had discussions about patient care services. The ALS Association was also in attendance, joining other members of the International Alliance of ALS/MND Associations to exchange information about the care and support of people with ALS/MND everywhere.

Here’s a short summary of some of the panels Sunny attended during her three days in Glasgow: [Read more…]

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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Raise Your Voice: Together, We Will Be Heard

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May is ALS Awareness Month. For the next 31 days, we will be dedicated to education about ALS and the important work we’re doing to find treatments and a cure. This month is also dedicated to advocating for people with ALS and their caregivers.

This year, Raise Your Voice to bring awareness to ALS. Even if you’re a person with ALS who has lost the ability to speak, you still have a voice. You can increase ALS awareness by sharing your personal story on social media, writing letters to members of Congress, donating to our mission, and using speech generating devices and sign language to talk to people about the issues people with ALS face every day.

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Your Support Makes a Real Impact

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Our vision at ALS Texas is simple: to create a world without ALS. Everything we do – the services we provide, clinics we support, research we fund, and laws and policies we advocate for – is done to help search for effective treatments and find a cure for ALS.

None of this is possible without your support. Would you support our mission by giving a tax-deductible, year-end donation today?

Donate Now

ALS Texas Mission Impact from ALS Association of Texas on Vimeo.

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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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First Recipient of Harrison Brown Volunteer of the Year Award Honored at the Austin Walk

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Whitney Sadler is the first recipient of the Harrison Brown Volunteer of the Year award.

We had the privilege of awarding the first Harrison Brown Volunteer of the Year award to Whitney Sadler at the 2017 Austin Walk to Defeat ALS.

The award honors the late Harrison Brown who lost his life in the stabbing at the University of Texas in May 2017.

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Make a Difference This May

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May is ALS Awareness Month!

Awareness is critical to our goal of ending ALS forever. The more people know about ALS, the more they get involved, and the more they support ALS advocacy and research. Through that support, we’ve made great strides toward finding potential treatments for ALS.

But we need your help to spread the word and keep the momentum going! It’s people like you who make everything we do possible. Here are a few ways you can take part in ALS Awareness Month:

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Congress Takes Action on ALS Priorities

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Thanks to nationwide advocacy efforts, Congress is taking action on several priorities for the ALS Community.

The Senate Appropriations Committee passed the fiscal year 2017 Health and Human Services spending bill and included $10 million to continue funding to the National ALS Registry. The National ALS Registry is a congressionally directed registry for people in the U.S. with ALS. It is a program to collect, manage, and analyze data about people with living with ALS, which helps doctors and scientists learn more as they work toward a cure. It is the only population-based registry in the U.S.

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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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