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