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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 Awards $1 Million to Fund Potential ALS Treatment

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Today marks a monumental day for ALS research as the first in-human clinical trials of AT-1501 have begun. AT-1501 is an antibody therapeutic developed by the ALS Therapy Development Institute (ALS TDI), with support from The ALS Association, ALS ONE, and ALS Finding a Cure®. The drug blocks immune cell activation and protects nerves against the progression of ALS. As of today researchers at Anelixis Therapeutics, lead by Dr. Steve Perrin, have successfully administered a dose of AT-1501 to the study’s first participant.

This is a great progressive step on our journey for a cure, and we’re happy to announce that the ALS Association awarded an additional $1 million to Anelixis to help fund this groundbreaking research.

“We are proud to partner with Anelixis and other ALS organizations to help advance this promising compound into clinical trials,” said Calaneet Balas, President and CEO of The ALS Association.

The safety trial of this potentially new treatment is currently enrolling volunteers, both those with ALS and those without, to participate in the study. In total, eight people with ALS will receive AT-1501 and will be monitored for safety , tolerability, and how the drug moves through the body. If it’s proven safe the trial will then move on to Phase II.

We’re excited for the prospect of this new treatment and we remain hopeful that together with patients, caretakers, donors, and researchers we can create a world without ALS.

Help us create a world without ALS by donating today.