This year our ALS community has come together in new ways, connecting from afar and working together, even when we are physically apart. In the midst of a pandemic your support never ceased. And because of you, we are now serving more people with ALS and their families than ever before.
Because of you, family caregivers are receiving the support and resources they need. Medical equipment is being loaned to people in need and alleviating their financial burden. Youth are sharing their voices and finding strength through shared experiences. ALS clinics are continuing to deliver specialized care and conducting clinical trials. New treatments are on the horizon.
Because of you, our Texas Chapter Events continue to raise crucial funds while moving to socially distanced and virtual fundraisers. And our Walk to Defeat ALS at Home brought Texans together from across the state, allowing us to gather safely even from afar.
This is how your support has made an impact on the lives of Texans with ALS.
Local Care Overview
Our team provides resources and support to people with ALS and their families. Your generosity enables us to continue this critical work, counseling newly diagnosed patients and helping Texans with ALS navigate the disease.
1,004 People with ALS are currently Registered with Our Chapter
(compare to 929 at this time in 2019)
From February to November 2020:
278 New Patients
(compare to 169 at this time in 2019)
1,165 Total Patients Served
(compare to 1,207 in all of 2019)
Our Equipment Loan Program provides crucial medical equipment to people with ALS, without charge. COVID-19 impacted this program significantly and due to safety concerns we were unable to access and deliver much of our equipment in our loan closet. We were purchasing new equipment to continue to meet the needs of people with ALS, but saw our funding dwindle rapidly. We asked for your help, and through your support, we were able to get the funding needed to continue this vital program. Now, we’re working with our partners to deliver needed equipment in a safe manner and ensure people with ALS have the equipment needed to navigate their everyday lives.
From February to November 2020:
331 Pieces of Equipment Loaned to People with ALS
If you are a person with ALS or caregiver who needs help with equipment, please contact us.
ALS Multidisciplinary Clinics
In the early days of the pandemic, many of our ALS Multidisciplinary Clinics had to cancel regular clinic days. As time has progressed, each clinic has modified their operations to best serve the safety of their community. Most have now resumed normal operations or offer a combination of in-person and virtual visits. We’ve been working closely with our clinic partners to help keep our ALS community safe and ensure our presence as a resource for Texans with ALS and their families.
Gathering in-person is not an option for our ALS community who are at greater risk to infection during this pandemic. To stay connected we moved all support groups to virtual platforms, which have continued to meet monthly. In addition, we transitioned in-person educational presentations and workshops to virtual platforms and provided statewide access. Seeing an emerging need, we also added a Veterans support group.
From March to November 2020:
120 Virtual Support Groups, Workshops, and Presentations
1,336 People Engaged in Virtual Events
You can view our upcoming virtual events here, and watch recordings of past events.
Community support has continued for Texans with ALS and their families. We worked with partners across the state to develop an educational series of presentations and interactive workshops. This included a clinical series, focused on different aspects of the ALS clinic, connecting healthcare professionals with the patients they serve.
New Family Programs
We’ve been listening closely to our ALS community to discover where additional resources are needed. Two big needs have emerged: greater support for caregivers and programs for youth and children. This year we have begun rolling out these virtual programs.
- Workshops for caregivers to manage stress and tips for self-care
- Workshops for multiple age groups of youth and children to cope with the diagnosis and care of a loved one
- Bereavement support group
- Caregiver morning coffee support group
- Youth Leadership Council
- National Family Caregivers Month Series
Walk to Defeat ALS at Home
The Walk to Defeat ALS 2020 looked very different this year. Although we were unable to all gather in-person, we still stayed connected. Our Live Opening Ceremony featured teams from across the state and conveyed the incredible energy of our ALS community. Big News: We met our goal of raising $1 million. Thank you to everyone who participated in the Texas Walk to Defeat ALS !
Watch the Texas Walk to Defeat ALS Live Opening Ceremony
Because of you, research is advancing and a potential treatment is on the horizon. In September, the New England Journal of Medicine published the results of a phase 2 trial (known as CENTAUR) of the compound AMX0035, produced by Amylyx, a Massachusetts-based pharmaceutical company. The results of the trial were very promising – people with ALS receiving this drug experienced a significantly slower decline in disease progression and lived an average of six months longer, compared to those on a placebo.
The ALS Association and I AM ALS have issued a petition calling on the drug company and the FDA to make the treatment widely available as soon as possible. To date, the petition has received more than 50,000 signatures.
On November 11, the Senate recommended $40M for the Department of Defense ALS Research Program (double the previous year’s amount) and $10M for the CDC National ALS Registry in their FY2021 appropriations bills. These victories help us better support the ALS community and bring us one step closer to defeating the disease.
Next, we wait for the House and Senate to agree on final funding levels. We’re cheering on our ALS community who are continuing to fight to make this a reality.
Looking to the Future
Because of you, we have a lot to look forward to in the new year. In January, we will launch new support groups for elementary and middle school children, as well as teen and young adult groups. We will also kick-off an educational series for people with ALS who have been newly diagnosed and their families, providing them with the resources needed for their journey. This will include information about current research, multidisciplinary care, employment and insurance, and navigating the disease.
Because of you, we have been able to increase access to support groups, presentations and workshops via virtual platforms. As we continue to navigate the pandemic and look beyond this crisis, virtual programming will continue to be a critical part of our work, enabling us to reach Texans with ALS and their families in all corners of the state. Even when we can safely resume in-person gatherings, we’ll continue to provide a place to virtually connect, learn, and share.
In the face of the pandemic, you made this crucial work possible. Thank you.