Rather than focusing solely on one area of ALS support, we focus on the entire ecosystem: local care, to support patients who need help now, advocacy, to ensure public policy serves the needs of ALS patients, and research, so that one day nobody will suffer from ALS again. All three of these areas serve an important, equal purpose for improving the lives of current and future people with ALS.
Local Care
ALS is a devastating disease — physically, emotionally, financially and logistically. Our goal is to alleviate as much of a family’s burden as we can, so we have programs like clinics, that provide comprehensive care for ALS patients under one roof, support groups, that help patients and families find comfort among those who understand what they’re going through, and one-on-one consultations with care services managers to help people living with ALS and their families navigate through every aspect of the disease.
Our Programs
ALS Association Certified Treatment Centers and Clinics – As ALS progresses, it becomes harder and harder for patients to leave their homes. Our patient care clinics house the doctors and medical professionals, including physicians, speech pathologists, and counselors, that an ALS patient needs to see. These physicians work together to ensure each patient gets top-quality care. This multidisciplinary approach is scientifically proven to extend patients’ lives.
Consultation and Referral – It’s important for ALS patients to find support close to home, so we do home visits and phone consultations to help ALS patients and their families find resources in their community.
Contact a Care Services Manager
ALS Connection Meetings – We host meetings throughout Texas for ALS patients, family members, and caregivers to help foster community and provide information that can help make their lives easier.
Equipment Loan Bank – ALS-related equipment can be very expensive, so we have a bank of durable medical equipment and speech generating devices (SGDs) available to loan free-of-charge to ALS patients. We also have qualified professionals who can recommend the best equipment for each patient.
Veteran Medical Benefits Referral Service – Military personnel are twice as likely to develop ALS, so we connect veterans with ALS to local veteran advocacy agencies that can help them navigate the exceedingly complex United States Veterans Administration (VA). The VA provides monthly compensation, equipment, medications, grants, home health services and more to veterans with ALS, and the ALS Association of Texas can help veterans get the most out of those benefits.
ALS Community Education – ALS is still largely an “invisible” disease, so we dedicate part of our time to educating the community about ALS and increasing awareness of the disease. We host events, conduct presentations and make every effort to spread the word about ALS in our local communities.
The “Living with ALS” Series – The ALS Association offers a series of manuals and DVDs that are extremely helpful for people with ALS, their family members, caregivers, and medical professionals. We provide these educational resources free of charge.
Caregiver Program – Being the primary caregiver for a loved one with ALS can be stressful — not only are they on-call 24/7, but they may have additional outside responsibilities, like working a full- or part-time job. Often, caregivers are so busy supporting their loved ones that their own physical or mental health takes second priority. It’s important that caregivers get the support and assistance they need so they can care for their loved one to the best of their ability. The Caregiver Program provides caregivers with everything they need to be successful, including workshops, support groups, and connections to caregiver-specific resources.
Youth and Children Program – Young children and teens often have a difficult time understanding what is happening to a loved one who has been diagnosed with ALS, and there are very few resources available to help them. A program for children and youth would address their unique needs and help them cope with a parent’s or grandparent’s diagnosis of ALS. Through workshops, camps, therapy groups, and children and youth-specific resources, we can help young people navigate the disease and support parents in caring for the emotional well-being of their children.
Bereavement Support – We provide support for those who have lost a loved one to ALS through survivor groups and referrals to appropriate community resources.
Please note that not all services are available in every region of the state, and some may have support programs and resources not listed here. Please contact a Care Services Manager in your area for more information about what is offered in your area.
Research
Over the last 30 years, the ALS Association has supported a global network of scientists who conduct cutting-edge ALS research across a variety of disciplines. In the past several years, this network of scientists has made significant advancements in understanding ALS and treating it in an ongoing effort to find a cure.
We make it a priority to share the latest ALS research advances with the ALS community. Read more about ALS research here.
Locally, the ALS Association of Texas urges people diagnosed with ALS to sign up for the National ALS Registry, which documents information about ALS to help researchers find patterns in the disease, and connects patients to clinical trials.
Advocacy
It’s important for our government to hear directly from people who live with ALS and those that care for them. We work on a local, state, and national level to improve the quality of life for people with ALS, and we also help empower ALS patients to make their voices heard.
ALS Association advocates have made significant strides for people with ALS in recent years. For example, as a direct result of our advocacy, Congress passed a law that shortened the Medicare wait time for ALS patients from two years to five months.
As part of our advocacy efforts, every May, we take a group of ALS patients, caregivers, and staff to the National ALS Advocacy Day and Public Policy Conference in Washington, D.C. There, more than 750 participants from across the country convene to learn about the latest ALS research and meet with Members of Congress to ensure that people with ALS have access to the care and technology they need. Annual government funding for ALS research has increased from $15 million a year to over $80 million a year, including a total of more than $950 million since the ALS Association created a Public Policy Department in 1998.