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  • Understanding ALS
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    • What Causes ALS?
    • Lou Gehrig and the History of ALS
    • ALS Glossary
  • Who We Are
    • What We Do
    • Our Leadership
    • Financial Information
    • Our Partners
    • Careers
  • Research
    • How ALS Patients Can Help
    • Research Resources
    • Research News
    • ALS Association Research
  • Navigating ALS
    • Newly Diagnosed
      • What Do I Do Now?
      • How to Share Your Diagnosis
      • Second Opinions
      • Resources
      • Clinics and Centers
    • Living with ALS
      • For Patients
      • Therapies & Care
        • Nutrition & Feeding Tubes
        • How to Improve Mobility
        • Dealing with Breathing Issues
        • Dealing with Speech & Swallowing Issues
        • Types of Assistive Equipment & Technology
        • Clinics and Centers
      • Living Setting
      • Daily Living Activities
      • Leisure Activities
      • Accessible Vehicles
      • More in Depth Resources/Manuals
    • Coping with ALS
      • Dealing with Anxiety/Depression
      • Changes in Thinking & Emotional Lability
      • Support Groups
      • Resources
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      • Caregiver Resources
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      • Register for a Walk
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      • ALS Fishing Classic
      • The Cowtown Affair
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How the ALS Texas Community Impacts National Policy

May 24, 2022 by Rhema Jones Leave a Comment

On May 18, 2022, several guests joined ALS Texas for a special virtual ALS advocacy event. During this insightful presentation, they discussed their experience as ALS advocates, what victories they’ve observed over the years, and how you can join the fight as an advocate. Keep reading for a recap of this exciting event!

Fighting Locally to Impact National Policy

When discussing ALS Advocacy, it’s easy to assume it starts at the White House, but that’s far from the case. In fact, the most important work you can do is with your locally elected officials. Director of Advocacy at the ALS Association, Ashley Smith, joined us to discuss this grass roots approach.

Ashley grew up in San Antonio and felt eager to connect with our ALS Texas community. “I’m always excited to talk to all of our Texas Advocates about how we empower people living with ALS, their loved ones, and the entire ALS community to advocate on behalf of themselves,” she shared.

Through her position, Ashley empowers people across the country to advocate on public policies that will impact people with ALS and their caregivers. Advocacy takes place at EVERY level of the government. From mayors to council members, all the way to the House, Senate, Congress, and President, but it all starts locally.

The ALS Association accomplishes this mission in several ways:

  • Sending action alerts to registered ALS advocates to equip them to speak up and advocate for key issues.
  • Engaging in in-person efforts, like district events, meetings, and conferences through the year.
  • Partnering with other advocacy organizations

“We will partner with anyone who wants to work with us and who has a voice in this space,” Ashley noted. There are many ALS organizations across the country that participate in ALS advocacy efforts, like I AM ALS and the Muscular Dystrophy Association. Additionally, other rare disease organizations partner with the ALS Association as those policies can impact multiple rare disease communities.

For example, the 2015 Steve Gleason Act, spearheaded by Team Gleason, ensures all those who medically need communication devices will have them covered by Medicare. This massive win not only impacted the ALS community but disease communities whose illness affects the voice.

As a collective, we have more power and can reach many more members of Congress than we can as a singular effort. – Ashley Smith

A Veterans Perspective on Advocacy: Juan Reyes

Juan Reyes, Air Force Veteran with ALS, joined the panel to share his experience. Since his diagnosis in 2015, Juan has become an incredible advocate for the ALS community, especially other veterans. Juan and his wife, Meg, felt inspired by the countless other people with ALS and their caregivers. They watched as those advocates used their voice to make things happen. “That’s what I caught the bug,” Juan shared, “It really infuses us with light, energy, love, and just the momentum to keep moving forward.

Juan recalled previous years when the Advocacy Day was held in-person in Washington D.C., his first experience being in 2016. Hundreds of ALS families came to the capitol, using their walkers, rollators, canes, and wheelchairs. “Making our presence known, it’s a time to bear hope,” Juan shared. There he had the opportunity to engage with elected officials and their staff to advocate for the community.

He shares with them his story, how he and Meg adopted three beautiful children and how this disease affects them all. How his military service made him twice as likely to be diagnosed with ALS than civilians. He also makes a point to share new studies that show there are certain career fields within the Armed Services are up to 10 times more likely to develop ALS.

He also shares the challenges that the general population experiences with this disease, especially given our nation’s healthcare system. He’s proud to have seen things big ticket items pass like the ALS Disability Insurance Access Act, which eliminated the waiting period for SSDI benefits for people with ALS, and ACT for ALS Act which creates better access to promising treatments for people with ALS.

Juan looks forward to what advocacy advancements are down the road and the moments he’ll have with his family along the way. “Although ALS makes every day challenging, I personally live by the rule, life is beautiful and amazing even with a terminal condition.”

Finding Power through Your Story: Sunny Brous

Sunny Brous was diagnosed with ALS in 2015 right before her 28th birthday. She’s been featured in many publications and partners with both local and national ALS organizations to advocate for change. Most importantly Sunny has found her voice and shares her experience on her blog SunnyStrong.com.

Since her diagnosis, Sunny has been to Capitol Hill three times, twice with the ALS Association and once with a rare disease legislation org. “Though those experiences were completely different, it’s still amazing to be able to be at the heart of where change happens and be able to own my voice through my story,” she shared.

Sunny encourages anyone that is even interested in advocacy to join the movement because of how simple it is. “They make it so easy. They send you the form letters, they tell you who you’re contacting, they draft the social media posts,” she shared. She noted they will even help you prepare points and your story if given a chance speak with an official.

Most recently, Sunny was thrilled to play a role in getting the ACT for ALS passed. “Getting to sit in my living room and watching President Biden come in and sign that into law just is amazing.” Sunny is testament to how people living with ALS benefit from these new laws. Through compassionate use, she receives a promising medication from the HEALEY ALS Platform Trial.

Being able now to participate in finding that next medication, finding that next therapy that makes this disease chronic and not terminal really rejuvenates my spirit and empowers me to keep going, Sunny Brous.

Sunny hopes that others will find the courage to join the fight against ALS as an advocate. Everyone has a story to share and deserves to have their voice heard. If you’re not ready to share your story, share Sunny’s story, share Juan’s story, share the stories from our community. “Anything you do is worthy of being shared and this community is better because of your voice,” Sunny shared.

How You Can Become an Advocate

From increasing funds for ALS research to the passing of the ACT for ALS Act, advocates across the country have helped make massive waves in public policy. But the fight isn’t over. We hope to make some significant advances in 2022, including:

  • Expand federal funding for ALS research
  • Ensure swift consideration and approval of new drugs at the FDA
  • Create more opportunities for people living with ALS to access new and emerging ALS treatments
  • Optimize Current Treatments and Care
  • Advocate for programs in Texas that improve the lives of people living with ALS and their loved ones

None of this is possible without you! Will you join the fight? Become an advocate in three easy steps below:

  1. Sign up to become an advocate by visiting alstexas.org/action.
  2. Keep an eye our for email notifications from our Advocacy team to take action! It’s as easy as clicking a button!
  3. Share stories from the ALS community to ANYONE who will listen! Storytelling is a powerful tool to raise awareness to this disease.

You can also join us for the 2022 National ALS Virtual Advocacy Conference from June 14  – 16. During the conference, attendees will learn the latest updates in ALS research, care services, and advocacy.

Become an ALS Advocate


Join the Virtual 2022 National ALS Advocacy Conference

Together, we can create a world without ALS!

To hear more from Ashley, Juan, and Sunny about their advocacy experience, watch the full event recording below!

Filed Under: Advocacy Tagged With: advocacy, advocate, ALS Advocacy

We Can’t Wait: ALS Advocates Urge the FDA to Expedite Access to Experimental Therapies

June 3, 2021 by Rhema Jones 1 Comment

The average life expectancy for someone after an ALS diagnosis is only 2 – 5 years. However, the process of developing, testing, and approving new treatments takes far longer. For those living with ALS, time is limited—We Can’t Wait.

On May 25, 2021, representatives from the FDA joined a We Can’t Wait Action Meeting. During this meeting, eight ALS advocates from across the US shared their personal experience with the disease to highlight why those with ALS need expedited access to experimental therapies.

Compelling Testimonials from the ALS Community

John Robinson from Parish, FL, a member of the board of trustees of the ALS Association and retired military veteran of nearly 32 years, was diagnosed with ALS in 2019. ALS not only affects the person with the disease but also their family caregivers. Both he and his wife can no longer serve their communities in the same way because of ALS. “The loss to society of their skills and humanity leaves holes never filled the same way again.”

Sunny Brous, a Texan with ALS, joined the call to share her perspective. Sunny was diagnosed with ALS in 2015 at the young age of 27. For Sunny, access to experimental treatments go beyond extending her own life. “Expanded access is how I can contribute to finding a cure for ALS. It takes my love for others and makes it a quantifiable action combining research and science and my dedication to the greatest good of people living with ALS.”

Sandy Morris, from Truckee, CA played a recorded message. She tearfully shared how many of her friends with ALS died waiting for access to life saving drug treatments. “Think about how much better it would be if we were able to die trying rather than die waiting,” she shared, urging the FDA to consider how their delays harm those living with ALS. “It’s not within my power to save my life—it’s within yours.”

Troy Fields from Champa Bay, FL was diagnosed with ALS in 2018. He noted how the considerations of benefits versus risk should be put in the hands of those living with ALS. “Because unless it is your own life on the line, you simply do not get it.”

Cari Meystrik from Nashville Tennessee was diagnosed with ALS in 1998 when she was only 28 years old. She has watched hundreds of friends die from this awful disease. “Would I jump to try a drug that might help me live longer of a disease that I am dying from if it has already proven to be sage and well tolerated but isn’t approved yet? Absolutely. Give me that chance.”

Jay Quinlan from New Orleans joined with his wife and caregiver Stephanie. “You have shown through your recent handling approvals for COVID vaccines that flexibility and expediting processes are possible.” He asked the FDA to use the same urgency when it comes to approving drug treatments for those living with ALS.

Tommy May from Pine Bluff, AR was diagnosed with ALS in 2005. Due to slow progressions, he was both unable to participate in clinical tries and frustrated with the lack of access to treatments. He discussed how those living with ALS are desperate for HOPE on their path. “We are not interested in the long-term. We are desperate for the here now.”

Larry Falivena of Apex, NC, has ALS caused by a mutation of the SOD1 gene. The fight for treatment access is not just for himself—it is also for his children. “I’m asking the FDA to help make sure my boys don’t have to worry about ALS.” He shares that even if the opportunity exists for just a small number of patients to have extended time on this earth that they need that chance.

Where Do We Go from Here?

In 2021, the ALS Association is committed to accelerating the development, approval, and access to affective new treatments. We will do this by re-introducing and passing the Accelerating Access to Critical Therapies (ACT) for ALS Act and the Promising Pathway Act, so the FDA is fully equipped to speed ALS trials and drug approvals. We will discuss these matters further during the annual ALS Advocacy Conference in June.

It is our sincere hope that the testimonials of these individuals and those who sent written stories will compel the FDA to make actionable changes for the ALS community. Time is off the essence—We Can’t Wait.

Submit your testimony to the FDA

Register for the Virtual ALS Advocacy Conference

Read Our 2021 Advocacy Priorities

Filed Under: Advocacy, News, Research Tagged With: advocacy, ALS Advocacy, ALS Research, ALS treatment, FDA

Patricia’s Story: Give Courage

December 16, 2020 by Rhema Jones 2 Comments

Patricia is the captain of her life and her ALS diagnosis, but she didn’t always feel that way. She, like many others with the disease, took time to accept her diagnosis, acknowledge how her life would change, and how her son and husband would be affected.

Walking through the door of her first ALS Multidisciplinary Clinic was a hard step to take—she even tried to leave. Her husband Oran shared that once she was able to accept her diagnosis, Patricia found her courage.

Today, Patricia and Oran are advocates for the ALS community. She and her husband attended the ALS Advocacy Conference in Washington, D.C. in 2018, where they met with members of Congress to advocate for patient rights and research funding.

Patricia and Oran have hope for the future. They’ve worked closely with the ALS Association of Texas, finding the resources and support needed, and knowing that they are never alone on this journey. “They’ve helped me a lot… they’re always there,” Patricia says.

Because of you, they have hope for a world without ALS.

Donate Today

Filed Under: ALS Hero, Fundraising, Inspiring PALS, Stories Tagged With: ALS Advocacy, als clinics, ALS Hero, inspiring pals

Because of You: 2020 in Review

November 18, 2020 by Tanner Hockensmith Leave a Comment

This year our ALS community has come together in new ways, connecting from afar and working together, even when we are physically apart. In the midst of a pandemic your support never ceased. And because of you, we are now serving more people with ALS and their families than ever before.

Because of you, family caregivers are receiving the support and resources they need. Medical equipment is being loaned to people in need and alleviating their financial burden. Youth are sharing their voices and finding strength through shared experiences. ALS clinics are continuing to deliver specialized care and conducting clinical trials. New treatments are on the horizon.

Because of you, our Texas Chapter Events continue to raise crucial funds while moving to socially distanced and virtual fundraisers. And our Walk to Defeat ALS at Home brought Texans together from across the state, allowing us to gather safely even from afar.

This is how your support has made an impact on the lives of Texans with ALS.

Local Care Overview

Our team provides resources and support to people with ALS and their families. Your generosity enables us to continue this critical work, counseling newly diagnosed patients and helping Texans with ALS navigate the disease.

1,004 People with ALS are currently Registered with Our Chapter
(compare to 929 at this time in 2019)

From February to November 2020:

278 New Patients
(compare to 169 at this time in 2019)

1,165 Total Patients Served
(compare to 1,207 in all of 2019)

Learn more about our Local Care Programs.

Equipment Loans

Our Equipment Loan Program provides crucial medical equipment to people with ALS, without charge. COVID-19 impacted this program significantly and due to safety concerns we were unable to access and deliver much of our equipment in our loan closet. We were purchasing new equipment to continue to meet the needs of people with ALS, but saw our funding dwindle rapidly. We asked for your help, and through your support, we were able to get the funding needed to continue this vital program. Now, we’re working with our partners to deliver needed equipment in a safe manner and ensure people with ALS have the equipment needed to navigate their everyday lives.

From February to November 2020:

331 Pieces of Equipment Loaned to People with ALS

If you are a person with ALS or caregiver who needs help with equipment, please contact us.

ALS Multidisciplinary Clinics

In the early days of the pandemic, many of our ALS Multidisciplinary Clinics had to cancel regular clinic days. As time has progressed, each clinic has modified their operations to best serve the safety of their community. Most have now resumed normal operations or offer a combination of in-person and virtual visits. We’ve been working closely with our clinic partners to help keep our ALS community safe and ensure our presence as a resource for Texans with ALS and their families.

We partner with 11 ALS clinics across the state of Texas. You can see the latest update about clinics here.

Staying Connected

Gathering in-person is not an option for our ALS community who are at greater risk to infection during this pandemic. To stay connected we moved all support groups to virtual platforms, which have continued to meet monthly. In addition, we transitioned in-person educational presentations and workshops to virtual platforms and provided statewide access. Seeing an emerging need, we also added a Veterans support group.

From March to November 2020:

120 Virtual Support Groups, Workshops, and Presentations

1,336 People Engaged in Virtual Events

You can view our upcoming virtual events here, and watch recordings of past events.

Community Education

Community support has continued for Texans with ALS and their families. We worked with partners across the state to develop an educational series of presentations and interactive workshops. This included a clinical series, focused on different aspects of the ALS clinic, connecting healthcare professionals with the patients they serve.

View the Clinical Series

New Family Programs

We’ve been listening closely to our ALS community to discover where additional resources are needed. Two big needs have emerged: greater support for caregivers and programs for youth and children. This year we have begun rolling out these virtual programs.

  • Workshops for caregivers to manage stress and tips for self-care
  • Workshops for multiple age groups of youth and children to cope with the diagnosis and care of a loved one
  • Bereavement support group
  • Caregiver morning coffee support group
  • Youth Leadership Council
  • National Family Caregivers Month Series
    • A Husband’s Perspective to Caregiving
    • Wife, Partner, and Caregiver – The Balancing Act
    • Young Caregivers Aren’t Alone

Learn More About our Caregiver Program

Learn More About Our Youth & Children Program

Walk to Defeat ALS at Home

The Walk to Defeat ALS 2020 looked very different this year. Although we were unable to all gather in-person, we still stayed connected. Our Live Opening Ceremony featured teams from across the state and conveyed the incredible energy of our ALS community. Big News: We met our goal of raising $1 million. Thank you to everyone who participated in the Texas Walk to Defeat ALS !

Watch the Texas Walk to Defeat ALS Live Opening Ceremony

Research Progress

Because of you, research is advancing and a potential treatment is on the horizon. In September, the New England Journal of Medicine published the results of a phase 2 trial (known as CENTAUR) of the compound AMX0035, produced by Amylyx, a Massachusetts-based pharmaceutical company. The results of the trial were very promising – people with ALS receiving this drug experienced a significantly slower decline in disease progression and lived an average of six months longer, compared to those on a placebo.

The ALS Association and I AM ALS have issued a petition calling on the drug company and the FDA to make the treatment widely available as soon as possible. To date, the petition has received more than 50,000 signatures.

Advocacy

On November 11, the Senate recommended $40M for the Department of Defense ALS Research Program (double the previous year’s amount) and $10M for the CDC National ALS Registry in their FY2021 appropriations bills. These victories help us better support the ALS community and bring us one step closer to defeating the disease.

Next, we wait for the House and Senate to agree on final funding levels. We’re cheering on our ALS community who are continuing to fight to make this a reality.

Looking to the Future

Because of you, we have a lot to look forward to in the new year. In January, we will launch new support groups for elementary and middle school children, as well as teen and young adult groups. We will also kick-off an educational series for people with ALS who have been newly diagnosed and their families, providing them with the resources needed for their journey. This will include information about current research, multidisciplinary care, employment and insurance, and navigating the disease.

Because of you, we have been able to increase access to support groups, presentations and workshops via virtual platforms. As we continue to navigate the pandemic and look beyond this crisis, virtual programming will continue to be a critical part of our work, enabling us to reach Texans with ALS and their families in all corners of the state. Even when we can safely resume in-person gatherings, we’ll continue to provide a place to virtually connect, learn, and share.

In the face of the pandemic, you made this crucial work possible. Thank you.

Filed Under: Fundraising, News, Research Tagged With: als, ALS Advocacy, ALS Research

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

January 11, 2019 by Jacque Amadi Leave a Comment

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…]

Filed Under: Advocacy Tagged With: advocacy, advocate, ALS Advocacy

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

Raise Your Voice: Together, We Will Be Heard

May 1, 2018 by Tanner Hockensmith Leave a Comment

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.

[Read more…]

Filed Under: News Tagged With: advocacy, advocate, als, ALS Advocacy, ALS awareness, ALS News, ALS Texas, Donate

Your Support Makes a Real Impact

December 29, 2017 by Tanner Hockensmith Leave a Comment

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.

[Read more…]

Filed Under: Fundraising Tagged With: als, ALS Advocacy, ALS awareness, als clinics, ALS Research, ALS Texas, ALS treatment, clinics, patient services

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

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