ALS Texas

Noninvasive Ventilators Removed from Competitive Bidding in Big Win for ALS Community

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The Medicare program at the Centers for Medicare & Medicaid Services removed noninvasive ventilators from competitive bidding for durable medical equipment. The decision will keep the devices out of competitive bidding for at least three years and is a victory for ALS advocates. The ALS Association and its partners have led an intense lobbying campaign against competitive bidding for noninvasive ventilators for more than a year. The Medicare program cited COVID-19 in announcing the move.

The Medicare program initiated a competitive bidding program for noninvasive ventilators in March 2019. The ALS Association immediately began a campaign to make sure our community did not lose access to these medically necessary devices, as well as the clinical support provided by respiratory therapists. The Association locked arms with the American Association for Respiratory Care, the National Association for the Medical Direction of Respiratory Care, and other partners to call on the Medicare program to remove noninvasive ventilators from competitive bidding.

When the Medicare program refused to reverse course, the coalition fought for the introduction of the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act to leverage pressure from Congress.

“Our coalition primed the pump for this decision with an intensive lobbying campaign warning lawmakers that people living with ALS would be greatly harmed if access to this life support system and respiratory therapists were restricted based on lowest-price bidding,” said Kathleen Sheehan, vice president of public policy at The ALS Association.

“This is a win for our community, but the work to protect access continues,” she added.

The ALS Association will continue to advocate with CMS to update coverage policies to ensure access to NIVs and the essential servicing provided by respiratory therapists in the future.

To learn more about the devastating impact competitive bidding would have on access to noninvasive ventilators, read a column on the subject by Tommy May, a member of The ALS Association’s national board of trustees, who helped lead the effort to educate lawmakers on the issue in November.

The original blog post can be found here.

Questions and Answers about COVID-19 and its Impact on People with ALS

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There have been many questions about COVID-19 and its impact on people with ALS, their families, and their caregivers. This situation is rapidly changing. We will update this FAQ as we receive more questions and more current information. If you have questions, please email questions@alsa-national.org.

Also, if you would like to hear our panel discuss these issues on a podcast, please check out the March 19 episode of Connecting ALS at ConnectingALS.org.

Q: How might COVID-19 impact someone with ALS specifically?

A: Even if you are young and otherwise healthy, anyone with ALS is at a very high risk to get COVID-19 and have complications. Most at risk are those with any respiratory muscle weakness and/or bulbar involvement. Although ALS patients, in general, have a good immune system, the most worrisome thing is the lack of a strong cough to clear away the secretions that may accompany the viral infection. Those secretions may stay in the lung and lead to pneumonia. So make sure you are avoiding contacts as much as feasible (social or physical distancing) and if you have been prescribed a cough assist and/or breath stacking device, use them religiously at least twice daily.

Q: What precautions should people with ALS, their caregivers, and family members take?

A: People should do what they can to reduce their risk of exposure. Most importantly, handwashing and avoiding touching your face makes a big impact in avoiding a respiratory illness. Staying 6 feet or more from people is also helpful. Your local community may even suggest staying at home or avoiding groups of a certain size, and we encourage you and your family to follow local health advice carefully. Also, avoiding preventable illnesses, like the flu, is very helpful. Your family and caregivers should check with their doctor about getting a flu shot if they have not already.

Q: I have been coughing for months due to my swallowing problems from bulbar ALS. How will I know when my cough is possibly due to the coronavirus?

A: Many people with ALS have a chronic cough. If you have the development of other symptoms of the coronavirus infection such as fever, body aches, sore throat or nasal congestion, then you need to be concerned that it is coronavirus and not just your usual ALS related cough.

Q: Should extra precautions be taken when handling packages, mail, or store-bought items that could have been handled by someone with COVID-19? If so, what would be the best way to handle those items?

A: It’s really important for everyone to wash their hands thoroughly and avoid touching their face as much as possible because we do not know who might be infected or what they touched. The virus has been shown to live on surfaces, especially hard surfaces like glass or plastic, for up to three days, and cardboard up to 24 hours. If you have a particularly strong concern about a surface or a person that touched it, spay it with a cleaning spray or wipe it down [the surface, not the person!]. Paper or cardboard through the mail is low risk, because of transit time and minimal handling. Content in a package, like a metal can, could, in theory, have some contamination on it and could have been handled less than three days ago, so it has some chance of some contamination. I have the strongest concern for hard surfaces that are touched by a lot of people, like a shopping cart handle. I would just assume they are contaminated and wipe them down if I can.

Q: My family just traveled by car back from Texas to Minnesota. Can I see them, or do they need to stay away?

A: Excellent question and it is very difficult to balance the need for protection from the virus and our social needs. I dislike the term social distancing and am using the term physical distancing. I think for your protection you should ask them to stay away if they have any symptoms of coronavirus – cough, fever, achiness, sore throat, etc. But if they have been healthy, extreme social distancing is appropriate – at least 6 feet away from you and do all the things you hear about – washing hands, covering sneezes and coughs, and minimize contact with anything others have been touching.

Q: What are you doing for your family?

A: I live at home with my wife and adult son – we are all healthy, but I am 70 and only work part-time (for now) seeing outpatient ALS patients. We are practicing extreme social distancing (I prefer the term physical distancing) and avoiding anyone else that we can. We speak to neighbors across the yard and spend extra time on the phone talking to friends. I am working in my office, but we are rapidly converting to telehealth visits as much as possible. We avoid going out other than walking the dog and taking a long hike in the afternoon when I have the time. We have stocked up for about 10 days – balancing our needs and avoiding hoarding.

The reason for the extreme social (physical) distancing is mainly to “flatten the curve”- keep the surge to a minimum so the hospital and all my critical care colleagues can stay safe. It also protects us and if I have to see some ALS patients, it minimizes the chances that I will transfer the virus to them.

Q: What is the impact of this across the Texas Chapter?

A: We’re here to help you navigate ALS – no matter what. For the time being, we have temporarily ceased any in-person interactions and instead work with our community virtually to safeguard our ALS community. We are utilizing video conferencing as our main form of communication internally and externally, we will continue to serve the ALS community through consultations, meetings, and support groups virtually. To see our latest updates, visit alstexas.org/covid-19-updates.

Q: What should someone do if their caregiver is exposed to the virus or diagnosed with the virus?

A: This is a very difficult question that depends on the situation. If at all possible, replace the caregiver. But I also know that caregivers are sometimes irreplaceable or live in your home (and sleep with you). If they live with you and are not replaceable, be extraordinarily careful about handwashing every time they touch you or are close to touching you. This might mean 5 times hourly with all the turning and adjusting needed by some PALS. They should wash their hands before touching you, and after touching you. This is the one situation where I would also suggest the caregiver wear a mask – a simple mask, not the N95 type. The simple mask will prevent any coughed or sneezed particles from spreading as easily. And they should socially distance themselves when possible, including sleeping in a different room if possible. I hope this does not happen, but with the expectation that a majority of us will get the virus over the next few months, it is highly likely.

Q: I am only 35 and in great health other than ALS. I understand that my age puts me in a very low-risk group for critical illness and death from the coronavirus. Does ALS affect my immune system and make me high risk?

A: Yes, age 35 has been considered low risk based on data from China. However, recent reports from Seattle suggest that young adults are still at risk and some are dying. In Seattle, they are emphasizing that this virus is dangerous for everyone, not just the elderly and unhealthy. Of course, the risk is highest in the older and unhealthy. But Seattle has seen young adults develop severe complications and even die. We are all in this together, and we have to do whatever we can to protect ourselves and right now that means social (really physical) distancing.

Q: Should I and my family members be taking our temperature every day?

A: I do not think there is an absolute right answer here. My practice and my hospital are requiring every person entering to have their temperature taken and answer a few questions about symptoms. If there is a fever or new symptoms suggestive of the coronavirus infection, they are asked to go home or seek care as needed. This is to protect the hospital and clinic patients and medical personnel. If I had ALS, I might do the same thing for anyone coming to care for me or any other necessary visitors.

Q: Is it safe to allow the home care aide to visit me or should I cancel and have a family member assist me?

A: Excellent question. There is no right answer for every situation. There are many implications to canceling your home care aide. Of course, from a personal safety point of view, minimizing contact with people, in general, does lessen the chance of getting the virus. But your family member may or may not have the ability to do what the caregiver can do and if you do not get the care you need it can be dangerous also. And your family member may get physically or emotionally tired if it is too much of a burden. And if it is a valuable caregiver, they may feel deserted and not want to return when you need them later. So I think it depends on your personal situation and deserves a thoughtful conversation with your family. The fact that you are asking suggests you have already been thoughtful about this.

Q: Should I ask all home care workers like aides and nurses to wear masks when they visit?

A: When considering this question, we have to balance the need for protection from your caregivers with the needs of our frontline health care workers. Masks are at a minimum, and hospitals right now are concerned that they will run out in the next week or two. I would ask your caregivers to wear a mask if they have symptoms of coronavirus and you have no choice but to have them take care of you – for example, a member of your family and you have no one else to care for you. Otherwise, there is little benefit to you, and we risk running out of facemasks for the health care workers who will be taking care of all of us when we get ill.

Q: My clinic team was talking to me about respiratory support equipment. Is it still available?

A: A number of larger respiratory home care companies have paused routine home visits; however, they continue to serve patients on an ‘as-needed basis,’ and are accepting newly referred patients. They continue to screen both patients and staff for recent international travel or fevers.

Q: Is it safe for my grandchildren to visit me?

A: Such a hard question when it comes to family visits. Social isolation is not what any of us needs in these times. But we also know that children carry many viruses, and with this epidemic, there is fear that they may carry it and have few symptoms so may be a source of spreading the infection without knowing it. And most ALS patients are at high risk of getting COVID-19 and having complications. Personally, if I had ALS and any respiratory compromise (for example low breathing test numbers <70% or need for respiratory equipment like AVAPS, Trilogy, cough assist), I would avoid every contact possible, especially young children who do not understand physical distancing and hygiene. I would use Skype, Facetime or other means to see and communicate with people, especially grandchildren who are probably better at using those devices than most of us. Q: My clinic appointment was changed to a “telehealth” appointment. How does that work?

A: If your clinic or medical provider has established a telemedicine capability, this will allow you to connect with your provider via video call (similar to what you might use for family and friends) or by phone if a video connection is not possible. This will allow your provider to conduct a ‘visit’ with you while you remain in your home or other location. This is especially important in the current environment where you will want to lessen your risk to viruses. Contact your provider to find out the specifics of how they intend to implement this option.

Q: Is it safer for my caregiver to go to the store during “senior hours” or to get groceries delivered?

A: We reduce our risk by reducing our exposure to other people and the things other people may touch (like doorknobs or computer keyboards). Getting things delivered has less risk than going to a store, and going to a store when it is less crowded, like during ‘senior hours,’ has less risk than going during a busy time.

Q: We already have respiratory equipment, but what about the supplies; tubing, masks, suction catheters-are they in short supply?

A: DME providers report they have current inventory; however, supplies are beginning to become low, and their orders may be filled on a delayed basis or only partially filled. It would be important to follow any home cleaning of your equipment and supplies and to make sure your supply order is up-to-date, even asking your DME company to provide supplies for the next 30 days now if available.

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We convened a panel of volunteers and staff to answer these questions – learn more about them here.

Cynthia Knoche is director, chapter care services. Cynthia maintains her license as a registered respiratory therapist and has spent the last 13 years assisting ALS Association chapters across the country with the development and delivery of their care service programs.

Dr. Lou Libby is a pulmonary and critical care physician with the Oregon Clinic and the lead pulmonologist at The Providence Portland Medical Center ALS Center. Dr. Libby also serves on the Association’s National Board of Trustees.

Kim Maginnis is the senior vice president of Care Services. Kim has worked in the healthcare industry for more than three decades, and her resume includes positions at Inova Health System, the Veterans Administration, and Harvard Community Health Plan.

Dr. Neil Thakur is the executive vice president of Mission Strategy. Dr. Thakur is also an epidemiologist and while he is not an expert on COVID-19, he is a public health researcher who got his Ph.D at Yale and later worked for many years at the NIH.

This blog was originally posted here.

Medicare Coverage for Telehealth Visits Expanded During COVID-19 Pandemic

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In response to congressional action, The Centers for Medicare and Medicaid Services notified providers of a new option for expanded Medicare coverage for telehealth visits. These changes temporarily remove the originating site and geographic restrictions from coverage of telehealth under Medicare fee-for-service. This coverage applies to all Medicare-approved telehealth services.

The government temporarily waived restrictions on telehealth in Medicare fee-for-service to enable more seniors to access care from their own homes during the public health emergency brought on by the coronavirus. The provisions were included in the Coronavirus Preparedness and Response Supplemental Appropriations Act.

The telehealth waiver applies to the treatment of all diagnoses during the Public Health Emergency, not just COVID-19-related visits.

Prior to this waiver, Medicare could only pay for telehealth on a limited basis: when the person receiving the service is in a designated rural area and when they leave their home and go to a clinic, hospital, or certain other types of medical facilities for the service.

Medicare beneficiaries will be able to receive a specific set of services through telehealth including evaluation and management visits (common office visits), mental health counseling and preventive health screenings. This will help ensure Medicare beneficiaries, who are at a higher risk for COVID-19, are able to visit with their doctor from their home, without having to go to a doctor’s office or hospital which puts themselves and others at risk.

The Medicare changes also clarify the ability of telehealth to be delivered through platforms such as Apple FaceTime, Facebook Messenger video chat, Google Hangouts video, or Skype.

“We are thankful the government is expanding telehealth services and making it more accessible during this difficult time,” said Neil Thakur, Ph.D., executive vice president of Mission Strategy of the ALS Association. “Our ALS community is part of the high-risk group of this virus, and a COVID-19 diagnosis could be devastating to a person living with ALS. Greater access to telehealth helps makes our ALS community safer.”

For more information and frequently asked questions, click here. The original blog was posted here.

How we’re continuing to serve people with ALS and their families while preventing the spread of coronavirus

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Updated May 1, 2020

We understand that many of you in our ALS community may have questions and concerns related to the spread of the coronavirus, known as COVID-19. We are closely monitoring national government health agency guidance and consulting with our local and state health agencies on dealing with the coronavirus.

With the developing news regarding COVID-19, we wanted to take a moment to share how The ALS Association of Texas is addressing the concern about our programs and events. Our first priority is the safety and well-being of people with ALS, their families and caregivers, and our staff.

  • We will temporarily cease any in-person interactions and instead work with our community virtually to safeguard our ALS community. We will assess this timeline as the situation progresses to determine if it should be extended.
  • Utilizing video conferencing, we will continue to serve the ALS community through consultations, meetings, and support groups.
  • We are closely monitoring the situation and are committed to following the recommendations of local, state and federal authorities.
  • We are evaluating each of our programs and events on a case-by-case basis and will notify you directly of any changes.
  • We will provide further details as-needed.

For the most recent information about the coronavirus (COVID-19), The ALS Association recommends that you reference the websites for the Centers for Disease Control (CDC), the World Health Organization (WHO), and state and local health authorities.

For specific information about symptoms you may be experiencing or questions about personal exposure as someone living with ALS or as a caregiver, please contact your physician directly. If you have questions about an upcoming clinic appointment, please contact your physician’s office directly.

Thank you for your patience as we manage this rapidly shifting situation.

Virtual Connection Groups & Workshops

We are still connecting! It just looks a little different. We have set up virtual Connection Groups, Caregiver Groups, Workshops and more. Take a look at our upcoming virtual events and join us!

Find an Upcoming Virtual Event

Please contact your local Care Services Manager for further information.

ALS Multidisciplinary Clinics

Our ALS clinics across the state are determining their operations on a case-by-case basis. Below are changes that we know are impacting future clinic dates. Please contact your clinic if you have any questions.

Austin/Temple VA clinics
• Planning to resume normal operations in June

Baylor in Houston
• Telehealth visits with all patients scheduled for May 8 and 29 clinics
• Sending all patients a letter explaining the plan

Central Texas Neurology
• Dr. Horvit will be doing telehealth visits with all patients.

DHR in Valley
• Continuing to see patients at the clinic. Giving patients option for telehealth visit.

Emory Bellard in RR
• Clinic in May will be telehealth visits. Planning to resume normal operations in June.

Houston Methodist
• Cancelled clinic in May; However, Dr. Appel will begin seeing new patients at West Pavilion 11 on 5/18/2020.
• They will begin seeing patients in the clinic on June 5; it will be a modified clinic with a limited number of patients and limited clinic team members. They will offer telehealth visits to some patients.

UT Health San Antonio
• Planning to resume scaled-back operations mid-May. Essential disciplines will see patients in-person at clinic.

South Texas VA in San Antonio
• Seeing only new patients and postponing follow-up patients.

Texas Neurology
• Cancelled clinic scheduled for May 1
• Offering telehealth visits to patients

Texas Tech in El Paso
• Still waiting on a decision for clinic in May.

Equipment Loans

We utilize community partners to help deliver and pick-up our loaner medical equipment. Specifically, we work with Travis Medical, National Seating & Mobility and Numotion in different parts of the state. Due to the current situation with COVID-19, there are some limitations on what we can deliver and where we can deliver.

What this means:

  • We ARE able to meet needs for smaller items such as loaner rollators, transport wheelchairs, shower chairs/benches, etc. as we can have them shipped directly to a patient’s home. *Please note that shipping of equipment is dependent upon current inventory and supply chains.
  • We may encounter limitations when it comes to larger items such as loaner power wheelchairs, patient lifts, hospital beds, etc.
  • We will not be able to pick-up any loaner or donated items right now in most areas of the state, excluding El Paso and the Rio Grande Valley.
  • Regardless of the type of equipment that is needed, please let us know what you need. In addition to the typical medical equipment needs, consider any items to help with activities of daily living (ADL’s) or any other household needs. We will do our best to fulfill these needs within the parameters in which we are operating currently.

NOTE: If you have a prescription for equipment and it is being billed through your insurance, you should still be able to get the equipment through your local medical equipment company.

If you have any equipment needs, concerns, or questions, please contact Marshall Nelson at 210-468-8281 or marshall@alstexas.org.

Respiratory Quality Services (RQS)

RQS manages the in-home respiratory care for the majority of our patients across Texas.

Statement from RQS: “Due to the Coronavirus pandemic, RQS is having to put some measures in place to ensure the safety of our patients, caregivers and respiratory therapists. Temporarily, we will no longer be making routine home visits unless absolutely necessary. If a home trip is warranted, we will take necessary precautions including being symptom free for the previous two weeks before entering the home. We will continue to reach out to patients via phone, text, face time, etc. on a monthly basis.  Our 24/7 on-call service will also be available.  Hopefully, this outbreak will be contained very soon.”

RQS has put together Cleaning Guidelines for respiratory equipment that we wanted to share with you. You can download the Respiratory Care Supply Hygiene PDF here.

Avoid Coronavirus Scams

The Federal Communications Commission (FCC) has received reports of scam and hoax text message campaigns and scam robocalls offering free home testing kits, promoting bogus cures, selling health insurance, and preying on virus-related fears. Do NOT click on links in texts related to the virus, and check cdc.gov/coronavirus for the most current information.

Helpful Resources and Information

Questions and Additional Support

If you have any questions or additional needs, please contact your local Care Services Manager.

ALS Association Makes Multi-Year Commitment to HEALEY ALS Platform Trial

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Photo provided by Texas Tech University Health Sciences Center in El Paso

This week a $3 million commitment was made by The ALS Association to the first platform trial for ALS. The platform trial will be taking place at the Sean M. Healey & AMG Center for ALS at Mass General in collaboration with the Barrow Neurological Institute and the Northeast ALS Consortium (NEALS). A “platform trial” is a clinical trial in which multiple treatments are tested and evaluated simultaneously. The Association’s commitment is $1 million per year for 3 years.

“This platform trial will significantly speed efficacy trials for ALS research, and is a major advancement for ALS research,” said Calaneet Balas, President, and CEO of The ALS Association. “In addition to supporting the HEALEY ALS Platform Trial, we will be working to ensure the rest of the research pipeline is moving fast enough to keep up. We are delighted to be partnering with Dr. Merit Cudkowicz and her team on this project.”

The platform trial model will greatly accelerate therapy development, allowing investigators to test more drugs, increase patient access to trials, and reduce the cost by quickly and efficiently evaluate the effectiveness of multiple therapies. This trial mode has already been proven successful in the cancer field. New treatments will be added to the trial as they become available which will decrease the gap in time from identification of an exciting therapy to testing. Having a shared infrastructure, common data & sample collecting processes, and centralized governance within the platform trial will help save time and money and led to more operational efficiencies.

“Working closely together, we will bring new therapies forward faster for people with ALS,” said Cudkowicz. “The platform trial builds on previous ALS Association supported research on many new ALS targets and trial innovations. The HEALEY ALS Platform Trial initiative can only succeed with the support and involvement of the entire ALS community. We look forward to ongoing partnerships with people and families with ALS, all ALS foundations, our colleagues in the NEALS Consortium, industry partners and regulatory agencies,” Cudkowicz added.

This funding from The ALS Association will directly support numerous parts of the platform trial. The following will directly benefit from this funding: the Clinical and Data Coordination Center activities at Mass General, the Biomarker Development Endpoint Engine, and the Monitoring and Outcome Measures Core at Barrow Neurological Institute.

The ALS Association will become an integral part of the Foundations and Benefactors Committee responsible for advising on study progress, data sharing, budget matters, fundraising, patient recruitment/retention and variety of other scientific and operational topics. In addition, the trial will be supported by the enrollment of patients at ALS Association Certified Centers of Excellence, Recognized Treatment Centers, and other affiliated centers.

This award to the Healey Center builds on a long relationship The ALS Association has had with Massachusetts General Hospital, Dr. Cudkowicz, and other researchers. The Association has committed over $9 million since 2010 to ALS researchers at Massachusetts General Hospital.

For more information, please email healeycenterforals@mgh.harvard.edu and visit the center’s website www.massgeneral.org/als/. To read the full press release, visit www.alsa.org/.

Meet Megan Cooley – Our New North Texas Regional Director

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The ALS Association of Texas has been dedicated to serving and supporting Texans living with ALS since our formation in 2012. Since then, we’ve seen major growth in our patient community which has led to a greater need for our services. This growth inspired a new on-the-ground leadership model in each of our three regions: North Texas, the Greater Houston region, and the Southwest Region. Regional Directors in each region oversee a team of care services professionals, fundraisers, and operational staff, bringing them together to best support patient needs and community fundraising.

The ALS Association of Texas is happy to welcome Megan Cooley as our new Regional Director in the North Texas area! Megan is a seasoned professional with 17+ years of experience in a variety of non profits, most recently a local domestic violence program, and prior to that with the Arthritis Foundation. Megan and her family are natives to their home state of Wisconsin but are no strangers to Texas and look forward to relocating back to the Dallas area. Megan has a bachelor’s degree in communications, a masters in organizational change leadership, and most recently received her certification in executive coaching. Welcome to the North Texas team Megan!

Patients all over the state deserve access to resources and care, and we hope to position ourselves to be able to reach those in more rural areas and beyond. We’re striving to provide every Texan living with ALS access to ALS clinics, support groups, durable medical equipment loans and other resources. With this new regional leadership structure in place, we are equipped to grow in our reach and impact. Feel free to say “welcome!” to Megan at megan@alstexas.org and send over any ideas you’d like to discuss regarding The ALS Association’s work in the North Texas area.

Meet Paige Ridout- Our New Greater Houston Regional Director

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Since forming in 2012, the ALS Association of Texas has dedicated itself to serving and supporting Texans living with ALS. Over time we’ve seen our patient community increase which, in turn, has led to a greater need for our services. This growth inspired a new on-the-ground leadership model in each of our three regions: North Texas, the Greater Houston region, and the Southwest Region. Regional Directors in each region oversee a team of care services professionals, fundraisers, and operational staff, bringing them together to best support patient needs and community fundraising.

The ALS Association of Texas is happy to welcome Paige Ridout as our new Regional Director in the Greater Houston area. Paige is a seventh generation Texan, spending her childhood in Beaumont, Texas. After eighteen years with the FISD Education Foundation, Paige has officially joined the ALS Association of Texas team and we’re so excited to have her on board to further support our mission in Houston and it’s surrounding areas.

Patients all over the state deserve access to resources and care, and we hope to position ourselves to be able to reach those in more rural areas and beyond. We’re striving to provide every Texan living with ALS access to ALS clinics, support groups, durable medical equipment loans and other resources. With this new regional leadership structure in place, we are equipped to grow in our reach and impact. Feel free to send your own personal welcome to Paige at paige@alstexas.org with any ideas you’d like to discuss regarding The ALS Association’s work in the Greater Houston area.

Serving in the Military Poses 60% Higher Risk for ALS

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For decades, researchers have been searching for correlations that may give insight into what causes ALS. While the direct cause remains elusive, there have been interesting findings over the years that could possibly bring us closer to a cure.

The ALS Association has released a new report highlighting the prevalence of ALS among military service members. In the 2019 ALS in the Military report, it was found that those who have served in the military are at a nearly 60% greater risk of developing ALS than those who have no history of military service. In addition, the data shows that ALS is connected to military service regardless of the branch of service or whether serving during peacetime or in war.

The report compiled findings from research conducted from the early 1990’s up until recent years with one of these studies examining  military members going back as far as 1910.  Finally in 2008, after many studies and decades of research,  the Department of Veterans Affairs established ALS as a service-connected disease. Since then, the average number of veterans living with ALS has increased by a staggering 30 percent.

“Study after study has shown that our military heroes are more likely to develop ALS, which is why it is critical that Congress fully funds the ALS Research Program at the Department of Defense, as well as research at the National Institutes of Health,” said Calaneet Balas, president and CEO of The ALS Association.

We’ve made strides and progress but we need more support to fund research that could help both veterans and non-veterans alike. ALS is a devastating disease but with your help, we’re well on our way to a deeper understanding and possibility of a cure.

New Leadership Model Furthers Mission in Southwest Texas

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Since our formation in 2012, the ALS Association of Texas  has been dedicated to serving and supporting Texans living with ALS. Over time we’ve seen an increase in the number of patients we serve which, in turn, has led to a greater need for our services. This growth inspired a new on-the-ground leadership model in each of our three regions: North Texas, the Greater Houston region, and the Southwest Region. Regional Directors in each region oversee a team of care services professionals, fundraisers, and operational staff, bringing them together to best support patient needs and community fundraising.

Following the hires of our Houston and North Texas Regional Directors, in March of 2019 the ALS Association of Texas is thrilled to welcome Janette Surrett as our newest Regional Director, overseeing the Southwest Texas Region (from El Paso to Central Texas, Austin  to San Antonio, the Coastal Bend area, and the Rio Grande Valley). She’s the first to fill this new position and we’re excited to see how she drives the impact of our mission to best serve our community and support people with ALS and their families.

Janette has spent her entire career dedicated to non-profit causes and comes to the ALS Association of Texas with a wealth of knowledge and resources. Janette is thrilled to continue her work here with the ALS Association Texas Chapter as the Southwest Regional Director, and looks forward to joining a team of leaders dedicated to finding a cure for ALS as they serve, advocate, and empower those affected by the disease.

Patients all over the state deserve access to resources and care, and we hope to position ourselves to be able to reach those in more rural areas and beyond. We’re striving to provide every Texan living with ALS access to ALS clinics, support groups, durable medical equipment loans and other resources. With this new regional leadership structure in place, we are equipped to grow in our reach and impact. Feel free to send your own personal welcome to Janette at janette.surrett@alstexas.org with any ideas you’d like to discuss regarding The ALS Association’s work in the Southwest Region of Texas.

Voice Your Love, in Honor of People With ALS

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Actress Courtney Cox with former publicist and person with ALS Nanci Ryder

Over time an ALS diagnosis can mean the loss of your ability to work, your ability to walk, and, sadly, your ability to speak. This can leave many people with ALS unable to tell their loved ones, in their own voice, just how loved they are. Families living with ALS say this is one of the most difficult emotional experiences of this cruel and aggressive disease.

When was the last time you told someone how much you loved them? The ALS Association has launched a new movement that challenges you to do just that and post it on social media.

In honor of all those impacted by ALS, we invite you to #VoiceYourLove starting today. Film a short video expressing your love for someone or something you care about and post it to social media with the hashtags #VoiceYourLove #ALStexas. We’d love to share and amplify your message.

Will you use your voice to spread awareness for ALS? Join us in voicing love today!