We’re doing more together. But what does this mean for our community?
Right now, we’re still serving more Texans with ALS than ever before in our history. This is a strong indicator of our connection to the ALS community across the state and how our reach to the ALS population has grown.
It’s estimated that 5 out of every 100,000 people will be diagnosed with ALS. If we compare that to the 2022 population of Texas, there’s estimated to be just over 1,500 people living with ALS in the state. There are currently 1,174 Texans with ALS registered with the ALS Association, meaning we serve 78% of the ALS population in Texas.
Serving this larger community requires more local resources, more programs, and more mental health support for our growing community. This is all possible because of you:
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 this disease with confidence.
From February – October 2022
1,174 Texans with ALS are Registered with Our Chapter
(Compare to 1,131 at this time in 2021)
303 New Texans with ALS Registered with the ALS Association
(Compare to 275 at this time in 2021)
1,417 Total Texans with ALS Served
(Compare to 1,320 at this time in 2021)
3,522+ Family Caregivers, Youth and Children Served
(Compare to 3,393 at this time in 2021)
Keeping Texans with ALS in Motion with the Equipment Loan Program
As ALS progresses, people living with the disease rely on durable medical equipment to eat, breathe, speak, and move on their own. These crucial devices aren’t always covered by insurance causing an immense financial burden for those living with ALS and their caregivers. With your support, the ALS Association can provide this life-saving medical equipment to Texans living with ALS at no-cost.
So far in 2022, we’ve loaned $1.1M+ worth of medical equipment to ALS families, and a combined total of more than $4.16M worth of equipment since 2020.
This program does so much more than just deliver the equipment. It also equips our families with the critical knowledge to use their equipment confidently, keeping them one step ahead of the disease. Read more about how the equipment loan program goes beyond the delivery.
Virtual Programming Provides Education and Mental Health Support
ALS brings unique mental and physical challenges for both those living with the disease and their loved ones. Virtual programs allow these families to find the knowledge and confidence to navigate the challenges of ALS, address stress and burnout, and maintain wellness.
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.
EDUCATIONAL PRESENTATIONS
- 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: In one session, Eye Tech Digital Systems discussed eye-controlled device options. In another, TobiiDynavox presented speech device options.
- Emergency Preparedness: Emergency Management Specialist from the City of Dallas discussed proactive measures to take before emergencies happen.
- Hospice and Palliative Care: Licensed Clinical Social Worker 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 and managing stress or everyone on the ALS journey.
- Running on Empty: A special workshop for caregivers to help recognize the signs of compassion fatigue and burnout.
- Trauma Informed Yoga: Sessions for youth and adults encouraging mindfulness through the practice of Yoga to help manage emotions and stress.
Anticipatory Grief: Trained professionals share how we can learn to recognize Anticipatory Grief in our life, while adding more coping techniques to our life toolbox.
CAREGIVER PRESENTATIONS
- To Taste Cooking Demos: Community partner, To Taste, demonstrated easy-to-prepare healthy meals that also included texture and calorie modifications for individuals living with ALS.
- fAmiLy talkS: Essential Conversations – Relationships: This year, the team expanded the fAmiLy talkS program to better serve ALS families. The new Relationships workshop provided space for those living with ALS and their partners/spouses to address essential conversations that help maintain a healthy relationship in the midst of ALS.
- Love Moves Us Forward with Jerry Koch: Guest speaker, Jerry Koch, shared his experience of being a caregiver for his wife Jeanie who passed from ALS in October 2021 and how love moves us forward.
- Improv for Caregivers with Stomping Ground: This workshop helped caregivers learn how to communicate in new ways, understand their loved one’s changing perspective, diffuse challenging behavior, and cope with the stress of it all.
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.
Multidisciplinary ALS Clinics Improve Quality of Life
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.
Critical Research Brings Us Closer to a Cure
LOCAL INNOVATIONS
We’re committed to supporting innovative ALS research happening right here in Texas. Today, there are 29 active clinical research trials running in Texas. 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
These efforts also include the innovative HEALEY ALS Platform trial which 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 it 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.
Read more about the HEALEY ALS Platform Trial
NEW FDA APPROVED TREATMENTS
In March, the FDA approved Mitsubishi Tanabe Pharma America’s (MTPA) oral suspension formulation of edaravone, aka Radicava ORS, for the treatment of ALS. Previously, the Radicava treatment could only be administered via intravenous infusion.
In an incredible win for the ALS community the FDA voted to approve AMX0035, now known as RELYVRIO. This came a year after Amylyx Pharmaceuticals submitted a new drug application for the drug which has shown to slow the progression of ALS and extend the life of those with the disease by around 6.5 months.
Read more about the approval of RELYVRIO.
If you or a loved one are interested in receiving either of these medications for the treatment of ALS, please reach out to your primary care provider.
Virtual Communities Provide Specialized Care
In the last year, we’ve continued to see success building virtual communities for Texans with ALS and their loved ones.
VIRTUAL CONNECTION GROUPS
Virtual connection 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:
881 People Attended
96 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
CAREGIVER GROUPS
- 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)
SPECIALTY GROUPS
- 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.
ALS TEXAS CONNECTION FORUM
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.
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.
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.
VIRTUAL PROGRAMS FOR YOUNG CAREGIVERS
- Trauma-Informed Yoga for Kids
- Young Caregiver Panel Discussion
- Magic Show with Jerry Koch
- LIVE Interview with Young Caregiver, Ronan Kotiya
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.
Read more about YCARE and the experience of two young caregivers in Texas.
Looking to the Future
Your commitment has provided innovative and collaborative care to our ALS community. As we look to the future, we are excited to see where our community can expand.
Because of you we’re still serving more Texans with ALS that ever before. Because of you, we have more hope that ever for a world without ALS.
We’re doing more together. Join us!
