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Because of You, We’re Serving More Texans with ALS than Ever Before. Here’s Why This Is Important.

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This year, we are serving more Texans with ALS than ever before. This number has especially grown the past two years, and is a strong indicator of our connection with the ALS community here in Texas. But what does this number of people served actually mean?

The Prevalence of ALS in Texas

It’s estimated that 5 out of ever 100,000 people will be diagnosed with ALS. Looking at this statistic and the 2021 population of Texas of 29.98 million, this means that there is an estimated 1,495 Texans living with ALS. On October 31st, we had 1,131 patients registered which represents 73.57% of the estimated ALS population in Texas.

Over the past 3-5 years, we’ve increased the number of patients served and the percentage of the estimated ALS community we are serving. Our goal is to one day reach 100%, meaning, we are serving every person living with ALS across the state.

Next year, keeping in mind the population increase to 30.4 million, we estimate there will be 1,520 Texans living with ALS. And we plan to support as many of them as possible.

How Does ALS Texas Get Connected to Texans with ALS?

Texans who have been diagnosed with ALS find us in a few different ways, but primarily:

  • 63% get connected through ALS multidisciplinary clinics
  • 21% find us through an internet search and/or the alstexas.org website

We’re exploring ways to raise more awareness of the disease and our organization in the medical community, especially in rural areas, so we can continue to connect with more Texans with ALS each year and support them as they navigate the disease.

Does “Serving More Texans with ALS” Mean the Cases of ALS Are Increasing?

As the population increases, we do expect to see a correlating increase in cases. However, outside of population growth, we have not seen a significant increase in the number of new cases of ALS; the fact is, more people with ALS are finding and connecting with ALS Texas for support, resources, and guidance throughout their battle with ALS. Here’s how that number has grown over the last decade:

How You Can Help

Our goal is to continue to serve more Texans with ALS than ever before with each passing year. This means we need more resources, more staff, and more programs to best support our growing community. You can make a big impact on the lives of Texans with ALS and their families by making a donation today.

Together, we can serve more Texans with ALS. Together, we can find a cure!

Make a Gift Today

Because of You: 2021 in Review

Because of You: 2021 in Review

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This year, our ALS community continued to work together to serve Texans with ALS and their families. It’s been a year of constant change, but your commitment never wavered. And because of you, we are serving more Texans with ALS and their families than ever before.

Because of you, family caregivers are receiving the support and resources they need. Youth are sharing their voices and finding strength through shared experiences. ALS clinics are delivering specialized care and conducting clinical trials. And promising treatments are on the horizon.

Because of you, our Texas Chapter Events continued to raise crucial funds through virtual and in-person fundraising events. And our Walk to Defeat ALS brought Texans together, as we gathered in Dallas, San Antonio, and Houston, and across the state.

Here’s an update on how your support has impacted Texans with ALS and their families so far this year.

Local Care

Our team works to provide critical resources and support to people with ALS and their families. Your support enabled us to continue this work, helping Texans with ALS navigate the disease.

From February-October 2021:

1,131 Texans with ALS are Currently Registered with Our Chapter
(Compare to 1,004 at this time in 2020, and 929 at this time in 2019)

275 New Texans with ALS
(Compare to 278 new patients at this time in 2020, and 169 at this time in 2019)

1,320 Total Texans with ALS Served
(Compare to 1,272 in all of 2020, and 1,207 in all of 2019)

1,400+ Family Caregivers, Youth and Children Served

Learn more about our local care programs

ALS Multidisciplinary Clinics

Since the start of the pandemic, we’ve worked closely with our clinic partners to help keep our community safe and ensure our presence as a resource for Texans with ALS and their families. Each clinic has modified their operations to serve their community, offering in-person and virtual options where appropriate.

Multidisciplinary clinics are a crucial part of caring for Texans with ALS. Dr. Daragh Heitzman, Clinic Director at Texas Neurology, states, “We know patients live longer when they attend clinic. It also saves them from having to visit multiple healthcare providers – physical therapy, speech therapy, occupational, respiratory therapy. If you can consolidate that, it makes it easier on the patients and the caregivers. Most healthcare providers, including neurologists, have zero experience with ALS. Coming to a clinic allows you to get it all-in-one, and to get help from people who are experienced with ALS.“

ALS Texas partners with 11 ALS multidisciplinary clinics across the State of Texas. Six of these clinics are also involved in research:

*Sites hosting clinical trials

View a full list of our clinics

Local Research

Through clinical trials and ground-breaking studies, innovative research to find treatments and a cure for ALS is happening right here in Texas. Here are two highlights of how we’re supporting research locally so that one day, we can create a world without ALS.

HEALEY ALS Platform Trial

  • Enables researchers to study multiple drug treatments at once, accelerating search for treatments and a cure
  • 54 test sites across the country, three test sites in Texas (Texas Neurology, Houston Methodist, UT Health in San Antonio)
  • A total of $3 million funded by the ALS Association
  • Texas Neurology was one of the first five initial sites, and Dr. Daragh Heitzman at Texas Neurology was recently appointed to the HEALEY ALS Platform Trial Executive Committee, the first physician investigator to join an elite group of scientists.

Read more about the HEALEY ALS platform trial

Treg Study at Houston Methodist

  • Promising research study into cell therapy that could slow progression of ALS
  • Currently in phase 2 trials
  • A total of $3.5 million funded by the ALS Association, MDA, and ALS Finding a Cure
  • Led by Dr. Stanley Appel at Houston Methodist

Read more about the TREG study

Staying Connected

Gathering in-person has not been an option for our ALS community since people with ALS are high-risk. Last year, we moved to a virtual support group model to keep this crucial community connection. Over the past year, we’ve seen an even greater need for people to connect and have added more support groups to address the needs of caregivers, youth, and children.

Once it is safe for our community some groups will move to a hybrid in-person AND virtual model. However, some groups will remain completely virtual, as it allows people from the Panhandle to the Valley to connect from afar.

From February-October 2021:

  • 805 People Attended
  • 116 Virtual Support Groups

Here’s a full list of our current and future groups:

  • Patient & Family Groups
    • Austin Connection Group
    • Corpus Christi Connection Group
    • North Texas Connection Group
    • Houston Connection Group
    • Rio Grande Valley Connection Group
    • San Antonio Connection Group
  • Caregiver Groups
    • Spanish-Speaking Caregiver Group (New in 2021)
    • Men’s Caregiver Group (New in 2021)
    • Brewed Awakenings – Women’s Caregiver Group
    • Austin Caregiver Group
    • San Antonio Caregiver Group
    • Corpus Christi Caregiver Group
  • Youth & Children Groups
    • Age 8-13 Support Group (New in 2021)
    • Young Adult Peer Support Group (New in 2021)
  • Specialty Groups
    • ALS & FTD Support Group (New in 2021)
    • Veteran’s Support Group
    • Bereavement Support Group

You can view a full schedule of monthly support group meetings, or register for an upcoming virtual group here.

Read more about the growth of this program

Tools for Navigating ALS & Community Programs

This year, we continued to launch new initiatives to support Texans with ALS and their families to help them navigate the disease and provide additional support to family caregivers. Here’s a look at the workshops, presentations, and programs we’ve delivered to our community this year.

From February-October 2021:

  • 427 people
  • Attended 25 virtual workshops, presentations and programs

Here’s a list of the virtual programs we offered in 2021:

View a full list of upcoming virtual events and presentations

Looking to the Future

Because of you, more Texans living with ALS are receiving care and support from ALS Texas than ever before, and our numbers are continuing to climb. Today, there is still no cure for ALS and there’s still more work to be done. We can’t do it without YOU! Together we can continue to serve MORE Texans with ALS than ever before. Together we can create a world without ALS.

Get Involved

Interested in helping us create a world without ALS?

Donate to Support the ALS Texas Mission

Start a Fundraiser

2021 Mid-Year Update: Serving More Texans with ALS Now Than Ever Before

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It’s been a year of constant change. But one thing remains the same – our commitment to serving Texans with ALS and their families. Last year, we served more Texans with ALS than ever before – and because of your support, we’re on track to serve even more people in 2021.

We’ve been listening to our community and have seen the need for greater support for caregivers, youth and children. This year, we’ve rolled out new programs to address these needs to better serve our entire ALS Texas community.

Here’s an update on how your support has impacted Texans with ALS and their families this year.

Local Care

Our team works to provide resources and support to people with ALS and their families. Your support enabled us to continue this work, helping Texans with ALS navigate the disease.

From February-July 2021:

1,100 Texans with ALS are Registered with Our Chapter
(Compare to 938 at this time in 2020)

202 New Texans with ALS
(Compare to 168 at this time in 2020)

1,226 Total Texans with ALS Served
(Compare to 1,065 during this time in 2020, and 1,272 in all of 2020)

1,200+ Family Caregivers, Youth and Children Served

ALS Multidisciplinary Clinics

Since the start of the pandemic, we’ve worked closely with our clinic partners to help keep our community safe and ensure our presence as a resource for Texans with ALS and their families. Each clinic has modified their operations to serve their community, offering in-person and virtual options where appropriate.

Multidisciplinary clinics are a crucial part of caring for Texans with ALS. Dr. Daragh Heitzman, Clinic Director at Texas Neurology, states, “We know patients live longer when they attend clinic. It also saves them from having to visit multiple healthcare providers – physical therapy, speech therapy, occupational, respiratory therapy. If you can consolidate that, it makes it easier on the patients and the caregivers. Most healthcare providers, including neurologists, have zero experience with ALS. Coming to a clinic allows you to get it all-in-one, and to get help from people who are experienced with ALS.“

ALS Texas partners with 11 ALS multidisciplinary clinics across the State of Texas. Six of these clinics are also involved in research:

*Sites hosting clinical trials

Local Research

Through clinical trials and ground-breaking studies, innovative research to find treatments and a cure for ALS is happening right here in Texas. Here are two highlights of how we’re supporting research locally so that one day, we can create a world without ALS.

HEALEY ALS Platform Trial

  • Enables researchers to study multiple drug treatments at once, accelerating search for treatments and a cure
  • 54 test sites across the country, three test sites in Texas (Texas Neurology, Houston Methodist, UT Health in San Antonio)
  • A total of $3 million funded by the ALS Association
  • Texas Neurology was one of the first five initial sites, and Dr. Daragh Heitzman at Texas Neurology was recently appointed to the HEALEY ALS Platform Trial Executive Committee, the first physician investigator to join an elite group of scientists

Read More about the HEALEY ALS Platform Trial

Treg Study at Houston Methodist

  • Promising research study into cell therapy that could slow progression of ALS
  • Currently in phase 2 trials
  • A total of $3.5 million funded by the ALS Association, MDA, and ALS Finding a Cure
  • Led by Dr. Stanley Appel at Houston Methodist

Read More about the TREG Study

Staying Connected

Gathering in-person has not been an option for our ALS community since people with ALS are high-risk. Last year, we moved to a virtual support group model to keep this crucial community connection. Over the past year, we’ve seen an even greater need for people to connect and have added support groups to address the needs of caregivers, youth, and children.

Once it is safe for our community some groups will move to a hybrid in-person AND virtual model. However, some groups will remain completely virtual, as it allows people from the Panhandle to the Valley to connect from afar.

Here’s a full list of our current and future groups:

Patient & Family Groups

  • Austin Connection Group
  • Corpus Christi Connection Group
  • Dallas / Fort Worth Connection Group
  • Houston Connection Group
  • Rio Grande Valley Connection Group
  • San Antonio Connection Group

Caregiver Groups

  • Spanish-Speaking Caregiver Group (Launching October 5, 2021)
  • Men’s Caregiver Group (New in 2021)
  • Brewed Awakenings – Women’s Caregiver Group
  • Austin Caregiver Group
  • San Antonio Caregiver Group
  • Corpus Christi Caregiver Group

Youth & Children Groups

  • Age 8-13 Support Group (New in 2021)
  • Young Adult Peer Support Group (New in 2021)

Specialty Groups

  • ALS & FTD Support Group (Launching Fall 2021)
  • Veteran’s Support Group
  • Bereavement Support Group

You can view a full list of monthly support group meetings, or register for an upcoming virtual group here.

From February-August 2021:

  • 83 Virtual Support Groups
  • 583 People Attended Virtual Support Groups

Read more about the growth of support groups

Tools for Navigating ALS & Community Programs

This year, we continued to launch new initiatives to support Texans with ALS and their families to help them navigate the disease and provide additional support to family caregivers. Here’s a look at the workshops, presentations and programs we’ve delivered to our community this year, and a sneak peek at future programs.

Navigating ALS Series

  • This special four-part series was designed for newly diagnosed families or those curious about the ALS journey. Participants learn everything from the basics of ALS to insurance and unemployment, to research and multidisciplinary care.

Educational Workshops

  • ALS & FTD: A presentation that overviews the specific challenges of combined ALS and frontotemporal dementia.
  • Respiratory Issues in ALS: Community partner, RQS, reviews the common respiratory issues in ALS and how to address them with assistive technology.

Mental Health & Wellness

  • Stress Less on Purpose: A special workshop on self-care for everyone on the ALS journey.
  • Running on Empty: A special workshop on compassion fatigue and burnout for caregivers.
  • Anticipatory Grief: Community partners discuss how to work through anticipatory grief.

Caregiver Presentations

  • To Taste Cooking Demos: Community partner, To Taste, share easy-to-prepare meals that are friendly for the whole ALS family, while demonstrating nutrition and texture modifications for those living with ALS.
  • National Caregiver Month Presentations (Coming in November)

Other Special Events

  • Youth and Children In-Person Workshop (Coming Soon)
  • Trauma-Informed Yoga Sessions (Coming Soon)

View a full list of upcoming virtual events and presentations

View past virtual event recordings

Looking to the Future

Because of you, we’ve continued to innovate, collaborate with community partners, and serve our ALS Texas community. Thank you for your continued support. Together, we can create a world without ALS.

Get Involved

Interested in helping us create a world without ALS? Join the Walk to Defeat ALS (at Home), start a fundraiser or donate today.

Join the Walk to Defeat ALS

Donate to Support the ALS Texas Mission

ALS Association of Texas Supports Texans with ALS Following the Winter Storm

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Last week, Texas experienced a once-in-a-lifetime winter storm that left millions of Texans without power and clean water. We are thankful that now the worst of the severe winter weather has move on through Texas and hopefully will not return.

The challenges of losing power and water created significant challenges for our ALS Texas family.  If you’re a Texan with ALS that experienced any significant challenges related to this disaster that were and are unsustainable, we are here to help. We have access to a disaster relief fund to help our ALS community with unplanned expenses as a result of the disaster, including but not limited to: 

  • Purchase of generators or other back-up power sources
  • Plumbing issues (busted pipes, flooding)
  • Relocation expenses as a result of power outage (hotel, fuel)
  • Other special equipment you purchased that you would not have purchased outside of the given situation

To apply for assistance, please contact the ALS Association of Texas team member in your area (listed below).

We cannot guarantee that we can address every need, but we will try to help as much as resources allow.  

“Spark Hope For a World Without ALS” – Our 2018 Recap

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In 2018 we set out with the goal to spark hope, ignite action, and inspire others to join us in the fight to create a world without ALS. And it was thanks to our wonderful community that we were able to achieve that goal. Throughout the year we provided patient services, hosted community events, and helped fund life-changing research to find new treatments for this devastating disease.

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Introducing UNLOCK ALS

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The ALS Association Introduces New Mission Integration Concept at the Walk to Defeat ALS

Each year, hundreds of thousands of people across the country bring their determination, energy, and passion to the Walk to Defeat ALS to celebrate the progress made in the search for a cure with the ALS community. This year, we’ll honor our loved ones who are battling ALS and who have battled ALS through our new program UNLOCK ALS.

We’ll celebrate the real possibility of unlocking the mysteries of ALS. Anyone may hold the key to UNLOCK ALS – a fundraiser raising funds for the cure, a person with ALS participating in a clinical trial, a researcher developing treatments, even you.

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New Leadership Model Enhances Mission Focus in Greater Houston Area

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houston-team
ALS Association Greater Houston team (left to right): Jordan Coldrick, Care Services Coordinator; Paulette Bennett, Care Services Manager; Alexis Hyatt, Database and Operations Coordinator; Jessica Welch, Regional Director; Eniye Elegon, Regional Development Coordinator

In July 2016, the ALS Association of Texas welcomed Jessica Welch as the organization’s first Regional Director on its statewide team. Tasked with leading the full mission of the ALS Association in the Greater Houston and East Texas region, her leadership in this new role has catapulted the Chapter forward in achieving its mission.

Thanks to this new on-the-ground leadership in the region, the team in the Houston office has a greater sense of ownership of their work and a renewed passion for ensuring they successfully meet the needs of those living with ALS in the region. And the results are evident with improved communications and team cohesiveness among the care services, fundraising, and operations functions.

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ALS Caregiver Recognized for Excellence in Caregiving

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Caregivers of people with ALS are crucial in the care of their loved ones battling this disease. Being the primary caregiver for a loved one with ALS can be stressful – not only are you on call 24/7, but you may have additional outside responsibilities, like working a full- or part-time job or caring for additional family.

ALS caregiver Trixie Stanford was honored at the Gordon Hartman Family Foundation‘s 2nd Annual Excellence in Caregiving Awards in April. A Belton resident, Trixie serves as the primary caregiver for her son Charlie.

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Fishermen Cast a Line for ALS

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On June 8 and 9, more than 65 fishermen from around the state gathered for the first-ever ALS Fishing Classic in Port Mansfield, Texas, raising $30,000 for the fight against ALS.

Participants competed in a speckled trout and redfish competition for prizes furnished by Yeti. They enjoyed a raffle, live and silent auctions, and delicious local food.

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ALS Can Never Steal the Joys of Motherhood

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In 2001, Patricia and Oran Hamilton welcomed their son Patrick into the world. As Patricia started this new chapter in her life, she knew that she wanted to cherish every moment of motherhood. Over the years, she watched as her son grew, encouraging his love of learning.

When Patrick was 11, Patricia started experiencing weakness in her hand, and went to a neurologist who gave her three different diagnoses. In March 2014, she was finally diagnosed with ALS.

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