We’ve made a commitment to serve more Texans with ALS and caregivers than ever before. Despite the challenges, from a pandemic that limited in-person contact to natural disasters impacting the community, your unwavering support has made this possible. And for that we are grateful. Because of you, for the third year in a row, we are on track to serve more Texans with ALS than ever before.
This last year has given us the opportunity to reconnect with our community, providing better support both virtually and in-person and it’s all thanks to you! Here’s a snapshot of 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 this disease with confidence.
From February – July 2022
1,170 Texans with ALS are Registered with Our Chapter
(Compare to 1,100 at this time in 2021)
From February-July 2022:
198 New Texans with ALS
(Compare to 202 at this time in 2021)
1,322 Total Texans with ALS Served
(Compare to 1,226 during this time in 2021)
2,340+ Family Caregivers, Youth and Children Served
ALS Texas Multidisciplinary Clinics
Our goal is to provide access to multidisciplinary clinics for all Texans living with ALS. This wouldn’t be possible without the support and dedication of clinic directors and their teams. As we continue to partner with these teams and invest in their clinics. We’ll put them on a path to expand access to ALS clinical care and increase the opportunities for more Texans with ALS to get involved in research studies and clinical trials.
This year we’ve added two more ALS multidisciplinary clinics to our network bringing the total to 13 ALS multidisciplinary clinics across the state of Texas—compared to 11 in 2021.
Healey ALS Platform Trial
The innovative HEALEY ALS Platform trial allows multiple ALS treatments to be tested at once. This not only allows participants to have a better chance at receiving an experimental treatment versus the placebo but also accelerates the rate at which clinical trials occur. Three ALS clinics in Texas currently host HEALY ALS Platform trial sites: Texas Neurology (one of the first five locations), UT Health San Antonio, and Houston Methodist.
In a recent update, the platform organizers shared that over 800 people with ALS have participated in this study across the country. Those who were enrolled in the first four clinical investigations (Regimens A-D with investigational products: zilucoplan, verdiperstat, CNM-Au8, pridopidine) completed their last visit for the 24-week randomized controlled portion of the trial. Results of these investigations are expected in the Fall. The fifth investigational product (trehalose – Regimen E), began recruiting participants in February 2022. Two additional industry regimen partners (Revalesio and Calico Life Sciences) are currently working on trial design.
Research and Clinical Trial Locations
At ALS Texas, we provide support for innovative ALS research happening right here in our state in the search for better treatments and a cure for ALS. Today, there are 19 active clinical research trials running in Texas with 15 of those currently enrolling new participants. Access to ALS research in Texas has been made possible through the expansion of Multidisciplinary ALS Clinics across the state. Currently, ALS Texas partners with 13 ALS clinics in Texas, seven of which are involved in research (compared to just 6 in 2021).
- Austin Neuromuscular Center*
- Baylor College of Medicine
- Houston Methodist*
- South Texas VA
- Texas Neurology*
- Texas Tech El Paso
- UT Health San Antonio*
*Sites hosting clinical trials
Specialized Care through Support Groups
In the last year, we’ve continued to see success with virtual connection groups. These groups are an emotional lifeline to Texans with ALS and their caregivers, allowing them to connect with those who understand their experiences at the click of a button.
From February-July 2022:
64 Virtual Support Groups
582 People Attended Virtual Support Groups
Here’s a full list of our current groups:
PATIENT & FAMILY GROUPS
- Austin Connection Group
- Corpus Christi Connection Group
- Houston Connection Group
- North Texas Connection Group
- Rio Grande Valley Connection Group
- San Antonio Connection Group
- ALS & FTD Caregiver Group
- Austin Caregiver Group
- Brewed Awakenings – Women’s Caregiver Group
- Corpus Christi Caregiver Group
- Men’s Caregiver Group
YOUTH & CHILDREN GROUPS
- Young Adult Peer Support Group (for those in high school, college, and under 30 who love someone with ALS)
- Newly Diagnosed Connection Group New in 2022
- Spanish-Speaker’s Connection Group
- Veteran’s Group
- Bereavement Support Group
You can view a full list of monthly connection group meetings and register here.
Expanding Educational Programming for the ALS Community
NAVIGATING ALS SERIES
This special four-part series was designed for newly diagnosed families or those curious about the ALS journey. After building momentum over the past year, the series unveiled new schedules and curriculum, with a new session on estate planning being added to existing research, multidisciplinary clinics and employment and insurance sessions.
- ALS & FTD: A presentation that overviews the specific challenges of combined ALS and frontotemporal dementia.
- Respiratory Management in ALS: Respiratory therapists reviewed the common respiratory issues in ALS and how to address them.
- Augmentative & Alternative Communication: Representative from Eye Tech Digital Systems discussed eye-controlled device options.
- Emergency Preparedness: Guest from the City of Dallas discussed proactive measures to take before emergencies happen.
- Augmentative & Alternative Communication: Representative from TobiiDynavox presented speech device options.
- Hospice and Palliative Care: Guest speaker differentiated between palliative care and hospice care and discussed the benefits of each.
MENTAL HEALTH & WELLNESS
- Stress Less on Purpose: A workshop on self-care for everyone on the ALS journey.
- Running on Empty: A special workshop on compassion fatigue and burnout for caregivers.
- Trauma Informed Yoga: Sessions encouraged mindfulness through the practice of Yoga to help manage emotions and stress. Two versions of this workshop were geared towards both adult caregivers and children who love someone with ALS.
- Anticipatory Grief: Community partner, Cariloop, will discuss how to work through anticipatory grief (Coming Soon)
- To Taste Cooking Demos: Community partner, To Taste, demonstrated easy-to-prepare meals that also include texture modifications that are friendly for the whole ALS family.
- National Caregiver Month Presentations: Each year we highlight the experiences of ALS caregivers with special workshops to bring them encouragement and education on the ALS journey. Some things coming up for this year:
- Caregiver Skills Training: A Collaborative Event with ALS Texas and Texas Woman’s University (Coming Soon)
- Improv for Caregivers
- Cultural Values in Caregiving Panel
OTHER SPECIAL EVENTS
- fAmiLy talkS – Relationships: This year, the team expanded the fAmiLy talkS program to better serve ALS families. The new Relationships workshop provided space to those living with ALS and their partners/spouses to address essential conversations they should have to maintain a healthy relationship in the midst of ALS.
This year, we launched new updates to the ALS Texas website. With a more robust events calendar, Texans with ALS and their caregivers can better see what virtual and in-person events are on the horizon. View a full list of upcoming events. You can also view recordings of past events here.
Enhancing Support for Youth and Children
In Texas we know that there are more than 3,000 youth and children involved in the ALS experience. These youth and children often support the care of their parent, grandparent, or other family member with ALS. No matter their involvement in caregiving, these children need unique emotional and educational support.
CARING WITH LOVE MONTH
In February 2022, ALS Texas hosted its inaugural Caring with Love Month to specifically highlight the needs and experiences of these young caregivers. During this month, we hosted several virtual events including:
- LIVE Interview with Young Caregiver, Ronan Kotiya
- Trauma-Informed Yoga for Kids
- Young Caregiver Panel Discussion
YCARE YOUNG CAREGIVERS WORKSHOP
ALS Texas partnered with Dr. Melinda Kavanaugh, associate professor of social work at the University of Wisconsin Milwaukee, to bring YCARE to Texas. This in-person workshop held at Texas Neurology in Dallas, provided education for a group of children involved in the care of a loved one with ALS.
Building Virtual Communities
Over the last year, many Texans with ALS have expressed the need for better opportunities to connect with other ALS families across the state beyond virtual support groups and events. Our team spring into action and after a year of research and planning we discovered a solution.
Just in August 2022, we launched the new ALS Texas Connection forum, a private online group dedicated to conversations and companionship for those impacted by ALS. This easy-to-use platform provides Texans with ALS and their family members the opportunity to build community with others in the state who understand their experiences.
If you live in Texas and are affected by ALS, or know someone in Texas affected by this disease, you can learn more about ALS Texas Connection here.
Looking to the Future
Your commitment has provided us the opportunity to provide innovative and collaborative care to our ALS community. Together, we are still serving more Texans with ALS than ever before, but our mission is not over. Today, we are still searching for a cure for ALS and you play a part in that.
Consider joining us for the Walk to Defeat ALS in October. We are thrilled to be back in-person for the majority of our walks across the state for the first time in three years. Join us as we honor our loved ones with ALS and celebrate hope for a world without ALS.