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.
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
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:
- Texas Neurology*
- Houston Methodist*
- Baylor College of Medicine
- South Texas VA
- UT Health San Antonio*
- Texas Tech El Paso
*Sites hosting clinical trials
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.
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
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.
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:
- 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.
- Other Special Events
- Youth and Children In-Person Workshop (Coming Soon)
- Panel Discussion: ALS Clinical Care and the Future of Research
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.
Interested in helping us create a world without ALS?