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Hope Through Research
Are you interested in learning more about and/or participating in an ALS clinical trial? The ALS Association partners with the Northeast ALS Consortium (NEALS) to provide the most accurate and up-to-date resource for information on both federally and privately funded clinical studies focusing on ALS and other similar motor neuron diseases.
There are both interventional clinical trials and observational trials. Interventional clinical trials examine if an experimental treatment is effective and safe under controlled environments. An observational trial examines people in natural environments to collect information about their disease, without giving an intervention.
To search for an interventional trial in your area, visit NEALS website at:
1. Click on Advanced Trial Search button
2. Click the state where you live in the Location pull down menu
3. Click Enrolling – under Study Status heading
4. Click Interventional Trial – under Type of Study heading
5. Click blue Search Button at the bottom of the page
This will list all currently enrolling clinical trials in your area that are testing a drug. Using the Advanced Trial Search tab, you can further narrow down trials by selecting additional criteria.
NEALS sources this database from public information posted on and other public websites. Therefore, not all trials included here are endorsed by The ALS Association and/or NEALS. Trials with a NEALS emblem, are those in which NEALS has a supporting role. This database is updated regularly, so please check back.
If you need support, you may contact the ALS Trial Liaison, Carly Allen. Carly is the Communications Manager at the Northeast ALS Consortium. You can reach her at (855) 437-4823 or for more information about clinical trials. She is available to answer all your questions, help navigate the NEALS clinical trial database, and can help you enroll in a trial.
Research at local ALS Treatment Centers
Healey ALS Platform Trial – This study consists of four medication arms: Zilucoplan, Verdiperstat, CNM-Au8, and Pridopidine. The trial has a 3:1 chance of study drug to placebo. All medication arms last six months and offer an open label extension upon completion, or the option to randomize into another medication arm. Key inclusion criteria are onset of symptoms less than 36 months and SVC greater than 50% (assessed during screening visit) NCT04297683 KU Medical Center, Nebraska Medicine & MU Health Care
Trial of Oxaloacetate in ALS (TOALS) – This is a safety and dose finding study looking at Oxaloacetate (OAA) in patients with ALS. This is a 28-day study in which we will attempt to enroll approximately 30 participants. Participants will know that they are on OAA. NCT04204889 KU Medical Center
CReATe 8009 TRIALREADY – Only enrolling Healthy Control patients. This is a prospective study in which patients with ALS and related disorders, as well as age and gender matched healthy controls, will be recruited and evaluated longitudinally using a systematic and harmonized approach across the participating clinical centers. Most of the clinical and biomarker data for ALS and related disorders patients without a C9ORF72 repeat expansion will be derived from the CReATe Consortium. However, the PGB study does not enroll healthy controls and includes only a limited number of C9ORF72 repeat expansion positive patients. NCT03912987 KU Medical Center
CReATe 8002 CAPTURE - The study will consent patients with ALS or related disorders that are receiving care at a clinical center in the CReATe consortium that uses Epic as its electronic health record (EHR) system. The study aims to systematically gather a clinical dataset through the EHR using a standardized approach to characterize the natural history of ALS and related diseases. NCT03489278 KU Medical Center
REFINE-ALS – REFINE-ALS is a prospective, observational, longitudinal, multicenter study designed to identify biomarkers to serve as quantifiable biological non-clinical measures of Edaravone effects in ALS. Epigenetic and protein biomarkers will also be investigated. During the estimated study period, eligible patients who are prescribed Edaravone within the approved indication will be invited to participate in the study. An initial screening/baseline visit will be scheduled for participants who are considered for study participation. Participants in this study will be followed from enrollment up to 24 weeks after treatment initiation (6 treatment cycles [each cycle consisting of 28 days], corresponding to a treatment period of approximately 24 weeks) or premature study discontinuation. Throughout the study period, the investigators will record participant baseline and follow-up information and perform clinical and biomarker assessments. NCT04259255 KU Medical Center
CY 5031 (Cytokinetics) KU Medical Center
PLS Natural History KU Medical Center & Nebraska Medicine
CReATe 8011 PGB 2 – The purpose of this study is to learn more about amyotrophic lateral sclerosis (ALS) and other related neurodegenerative diseases, including frontotemporal dementia (FTD), primary lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), progressive muscular atrophy (PMA) and multisystem proteinopathy (MSP). More precisely, the investigator wants to identify the links that exist between the disease phenotype (phenotype refers to observable signs and symptoms) and the disease genotype (genotype refers to your genetic information). The investigator also wants to identify biomarkers of ALS and related diseases. NCT04875416 KU Medical Center
CReATe 8010 Image ALS – The primary aim of this study is to determine whether longitudinal neuroimaging acquired across multiple research and clinical centers is a feasible biomarker to use as an outcome measure for clinical trials in amyotrophic lateral sclerosis (ALS). NCT04490096 KU Medical Center
Anelixis - This is a Phase 2a, multi-center, open label, multiple dose study of AT-1501, a humanized monoclonal antibody antagonist to CD40LG. Approximately 54 adults with ALS will be enrolled into the study in the United States at up to 12 ALS treatment sites. Four ascending doses of AT-1501 will be administered as an IV infusion to sequentially enrolling cohorts. Each participant will receive 6 bi-weekly (every other week) infusions of AT-1501 over an 11-week period. The study is estimated to take 19 weeks for participants. NCT04322149 KU Medical Center
Combat ALS - A Phase 2b/3 multicenter, randomized, double-blind, placebo-controlled, parallel group study to evaluate the efficacy, safety and tolerability of MN-166 given to ALS participants for 12 months followed by a 6-month open-label extension phase. NCT04057898 KU Medical Center
For more information, contact your local ALS Navigator.
What can I do to help ALS Research?
One of the questions that people living with ALS often ask is – what can I do to help ALS research?
The National ALS Registry may be the single largest ALS research project ever created and is designed to identify ALS cases throughout the entire United States.
Every person living with ALS in the United States can enroll in the National ALS Registry! The Registry is collecting critical information about the disease that will improve care for people with ALS and help us learn what causes the disease, how it can be treated and even prevented. To sign up for the National ALS Registry go to:
The Agency for Toxic Substances and Disease Registry (ATSDR) launched the National ALS Biorepository as a part of the Registry in January 2017. This launch came after a pilot study that showed it was feasible to include a biorepository. The Biorepository is collecting biological samples from persons with ALS. It’s different from other biorepositories because it does not limit who can take part to a specific area, study, or clinic. This means that participants’ samples may help researchers everywhere work toward better understanding the causes of, and possible treatments for ALS.
While giving biological samples may sound complicated, it is not. The Biorepository makes taking part easy, and it’s free to participants. The biological samples will be collected in the patient’s home. Samples collected could include blood, saliva, and urine. These samples will be stored and available for research. It is also possible for a person with ALS to sign up to give tissue to the Biorepository after his/her death.
How will these samples be used? Samples will be used for research about ALS. Samples can be linked with the participant’s Registry risk factor survey data. Connecting biological samples with risk factor survey data will make the Registry more complete and useful.
Also, researchers approved by ATSDR will be able to request samples from the Biorepository. This Biorepository may help scientists better understand the cause(s) of ALS. For example, researchers may be able to study the genetic variation in those with ALS. Analysis of these types of specimens has already proven useful in discovering important genes related to ALS and other motor neuron diseases.
To take part in the National ALS Biorepository, the person with ALS must be enrolled in the Registry. From there, enrollees who indicate interest in learning more about the Biorepository, will receive a packet of information about the Biorepository.
While we do not yet know what causes ALS, the Biorepository is an opportunity for people with ALS to contribute to ALS research that could help us learn more about the causes of ALS. The Registry and Biorepository contribute to a better understanding of ALS. Learning more about people who have ALS is critical in the battle to defeat it.
The National ALS Biorepository is a powerful, generous and meaningful way to take action and push research toward the ultimate goal of a cure. Please help advance ALS research – consider signing up for the National ALS Biorepository today, by visiting:
ALS Research Focus Areas
The ALS Association is the largest private funder of ALS Research worldwide, and our efforts have led to some of the most promising and significant advances in ALS research. Everything we do supports our mission of finding treatments and a cure for ALS, which is why it is so critical to fund outstanding ALS research.
We tackle ALS through supporting scientific studies in the following scientific focus areas:
Assistive Technology: This can include a variety of tools and devices that improve quality of life, despite all limitations.
Biomarkers: These are measurable substance that changes with a change in the body’s state. As a diagnostic tool, biomarkers should be specific to ALS.
Clinical Studies: These studies are funded by The Association research program and include both clinical management projects, as well as clinical trials.
Cognitive Studies: ALS and frontotemporal dementia (FTD) are considered a spectrum disorder with pure ALS or pure FTD at either end of the spectrum.
Disease Mechanisms: From years of research, scientists have identified various disease processes involved in ALS.
Disease Models: ALS disease models used in the laboratory help researchers understand the basic processes of the disease.
Drug Development: Researchers from all over the world in academia, government, non-profit and industry work together to move as rapidly as possible.
Environmental Factors: Researchers are looking for aspects of lifestyle that can interact with genes to cause or contribute to ALS.
Genetics: There are an increasing number of gene mutations that have been identified both in familial and seemingly sporadic patients.
Nanotechnology: This is the science of studying objects that are 1 to 100 nanometers in scale, such as molecules and atoms.
Natural History Studies: These studies of ALS are designed to examine the course of the disease over time.
Precision Medicine: This refers to the tailoring of medical treatment to the individual characteristics of each person.
COVID-19 has brought many challenges to most of us, but one positive thing is the increased availability of telemedicine visits. During these visits, providers establish an audiovisual connection with a patient. Benefits to telemedicine visits include: ease, convenience, decreased exposure to disease, and minimized expense and time.
Your time and the quality of these visits are important. Our goal is to offer the most complete assessment possible, while providing the convenience of telemedicine.
Below are some tips to help you prepare for your telemedicine visit:
Identify an area in your home that you think would work best that includes an area with a surface on which to place your laptop or tablet. Preferably, your electronic device should be portable or moveable.
Make sure you have enough room to move about freely. During a telemedicine visit, you may be asked to perform minimal tasks that require movement.
Set up your camera so that you are facing a window. This will provide the best light. If your back is to a window, the provider will only see you as a silhouette, and facial movements are often a vital part of an assessment.
Please refrain from using background pictures, screensavers and/or background lighting.
Come prepared with written items to discuss and any questions or concerns you may have.
If a family member or family members will be participating with you, please identify one person to be the primary spokesperson.
For our purposes, your electronic device needs three things for a successful telemedicine visit: power, a way to send and receive data and the application (app).
Power: make sure you are set up either near an electrical outlet or your device is charged and has plenty of battery life.
Data availability: data, when you are connected to the internet, is exchanged over Wi-Fi (most laptops and tablets use) or cell data (via cell towers).
Application (app): Download the app prior to your visit. It is important to familiarize yourself with the app, as well as how to access your camera and microphone on your device.
CMS Expands Telehealth Coverage for SLP Services
Recent changes at the Centers for Medicare & Medicaid Services (CMS) will enable people with ALS to receive critical services provided by speech therapists, normally provided at in-person visits, via telehealth during the pandemic. These services include clinical care for swallowing and speech-generating devices - many challenges people living with ALS are faced with every day.
The ALS Association worked closely with the American Speech-Language-Hearing Association (ASHA) to ensure that five services critical to people living with ALS were added to the telehealth coverage list: treatment of swallowing dysfunction and oral function for feeding, a one-hour evaluation for speech generating devices, 30 minutes of additional evaluation for a speech generating device, therapeutic services with speech generating devices including programming and modification, and evaluation of oral and pharyngeal swallowing function.
The Association relied on the expertise of Amy Roman, a speech language pathologist at the Forbes Norris ALS Research and Treatment Center at California Pacific Medical Center in San Francisco in advocating for these changes. Amy treats approximately 140 people living with ALS each year.
“These changes will allow speech therapists at ALS clinics and throughout the country to continue treating patients in the safety of their homes and cover services that can be done effectively using telehealth,” said Kathleen Sheehan, Vice President of Public Policy for The ALS Association.
Telehealth coverage was made retroactive to January 1 and will be in effect through the end of the federally declared public health emergency, which is expected to last minimally through the end of 2021.
While the codes are currently set to expire at the end of the current public health emergency, The ALS Association will continue to fight for permanent expansion of telehealth services beyond the pandemic.
Fighting for Continued Expanded Access to Telehealth
Expanded access to telehealth is a key public policy priority for the Association this year, and recent developments on Capitol Hill show momentum in the fight.
In March, we endorsed the Telehealth Modernization Act, which would make telehealth permanent for Medicare beneficiaries. We submitted written testimony to the House Energy and Commerce Committee to make clear why telehealth is important to all people living with ALS, now and after the pandemic – both for medical care and increasing opportunities to participate in clinical trials.
While everyone has generally benefitted from the temporary expansion of telehealth during the pandemic, people living with ALS have experienced expanded access to ALS multidisciplinary care across state lines in a way that was not possible before COVID. Data has shown that this type of care increases quality of life and survival for people living with the disease.
Regardless of COVID, travel to clinics for someone living with ALS and their family can be burdensome given the loss of mobility that is experienced as symptoms progress and wheelchairs and ventilators are required. While telehealth is not a replacement for hands on care from an ALS physician, telehealth does extend the ability of the clinician to make timely adjustments to the treatment plan as changes occur in loss of function, particularly the ability to breathe and eat.
While the pandemic has slowed research and conditions vary across the country, clinical trials are underway using appropriate safety precautions. Telehealth has made it possible for researchers to effectively follow clinical trial participants in terms of trial protocol and any care that is needed.
Telehealth can provide a safe and effective way for people living with ALS to receive care from medical providers and specialists. Remote clinical trials also provide patients the chance for access to potentially effective treatments. But Congress must act to ensure access to both continues beyond COVID.
The ALS Association Mid-America Chapter’s Equipment Loan Pool Program consists of used and donated equipment. Donations to the Equipment Loan Pool Program, allows us to continue to provide equipment for those with ALS, for as long as they need it and at no cost.
If you would like to donate equipment to The ALS Association, we can arrange to have it picked up by our loan closet (managed by Numotion). We will then provide you with a tax receipt. Items valued over $5,000 require an appraisal. The IRS regulations prohibit us from providing an appraisal or to set a value on the donation. Should you feel you have an item worth more than $5,000 and you would like to receive a tax credit, you must have the item appraised by a qualified appraiser before we are able to take possession. Please consult with a qualified tax professional if you have any tax related questions. Some people opt to skip the appraisal and claim $4,999 on their taxes as the appraisal itself can cost upwards of $1,000.
Contact your local ALS Navigator for more information, or if you would like to donate equipment to The Chapter’s Equipment Loan Pool Program.
Energize your Body: Smoothie Recipes
Shower and Bathroom Safety
Living with ALS can make everyday tasks, that once required little thought or effort, a challenge. Basic hygiene tasks performed in a bathroom, including bathing, hair combing, tooth brushing, and related activities, often require added support for safety and comfort.
In the early stages of ALS, maintaining independence is paramount for most, particularly when it comes to bathing, dressing and using the toilet. Staying one step ahead of the changing needs that accompany an ALS journey may prolong independence and allow caregivers to easily step in with the right tools when needed.
Creating an ALS Accessible Bathroom Space: Consider making the bathroom more accessible by installing handrails next to the toilet and inside the shower stall to provide additional balance and support. A padded shower chair with skid-proof rubber supports can help reduce the risk of falling, while supporting independence and conserving energy (sitting versus standing). Installing a hand-held shower head will add to the comfort of a seated shower. You may also consider remodeling your bathroom to include a roll-in shower for easy access throughout the progression of the disease.
Bathrooms can be slippery. Reducing moisture outside of the bathtub or shower can help prevent falls. If your bathroom does not have an exhaust fan, consider installing one. Line the bathtub or shower area with a non-slip mat. Add slip-prevention rugs or “self-stick” strips to main surface areas surrounding the sink and other common pathways. Also, round all hard counter edges and soften corners to reduce the chances of injury in the event of a fall.
As ALS progresses further, bathing techniques will need to change, and more help from a caregiver may be required. As muscles get weaker, it is more tiring for people living with ALS to bathe independently. It may be advisable to avoid prolonged bathing in warm water, as it may worsen muscle fatigue.
Gather the Right Tools: A rolling shower chair, which offers more support than a simple bath bench, may be beneficial. You can transfer into the rolling shower chair wherever it is easiest, eliminating difficult transfers in the small space of a bathroom. You may also consider using disposable body wipes or doing a bed bath if transfers to the shower become too difficult.
There are many different tools available to assist someone with ALS as they complete their everyday tasks. If you have difficulty doing something, there is usually a device created to help you! A few of the more commonly used items for hygiene are:
• Raised Toilet Seat is easier to get on and off a higher seat, and if you get one with arm rests that drop out of the way, transfers are even easier.
• Bidet attachment for the toilet aides in independence when toileting and helps the caregiver when more assistance is needed.
• Long-handled sponge makes reaching your feet and back easier while bathing.
• Shower bench or chair with a hand-held shower head helps with safety and energy conservation.
• Electric toothbrush and shaver helps when hand strength begins to decline and makes the job of the caregiver easier when outside help is needed.
For more information and resources, contact your local ALS Navigator.
Connecting ALS is a weekly podcast produced by The ALS Association’s national office and the Association’s Minnesota/North Dakota/South Dakota Chapter. Episode topics include research and technology developments, advocacy efforts, and personal stories woven through the ALS community. To listen to podcast episodes, visit: www.connectingals.org.
2021 Public Policy Priorities
Our federal advocacy work focuses on educating and mobilizing all members of Congress and the Administration in a nonpartisan fashion to achieve the mission of The ALS Association: To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS to live their lives to the fullest.
This year, The ALS Association will aggressively advocate for legislative priorities that will:
Accelerate Development, Approval and Access to Effective New Treatments: Congress should re-introduce and pass the Accelerating Access to Critical Therapies (ACT) for ALS Act and the Promising Pathway Act. People with ALS urgently need effective new treatments. FDA must be fully funded, fully staffed and provided the regulatory authority they need to be fast and effective and speed ALS trials and drug approvals.
Increase Federal Funding for ALS Research: People with ALS urgently need the federal government to increase investments in ALS research that will lead to the discovery of effective treatments and a cure. This means we need more ALS scientists, more ALS clinical trials, and more ALS research that can lead to effective treatments and prevent new cases of ALS.
• National Institutes of Health Funding for ALS – Department of Health and Human Services: Congress should increase funding to at least $130 million for ALS research at NIH in fiscal year 2022 to attract the next generation of scientists, accelerate the discovery and development of new treatments and increase the number of ALS clinical trials.
• ALS Research Program (ALSRP) – Department of Defense: Congress should increase funding to at least $60 million for the ALSRP in fiscal year 2022 to allow the program to build on a solid foundation of promising preclinical research to increase the number of ALS clinical trials by funding its own early phase trials.
• Orphan Products Grants Program (OPGP) – Food and Drug Administration: Congress should provide at least $50 million specifically for ALS research to the OPGP in fiscal year 2022 to increase the number of ALS clinical trials and allow FDA to apply their own unique regulatory expertise in those trials to expedite treatment development, foster innovative trial designs that complement and speed regulatory processes, and enable natural history studies to more quickly understand ALS progression and pathology.
• National ALS Registry and Biorepository – Centers for Disease Control and Prevention: Congress should provide at least $10 million to continue the National ALS Registry and Biorepository in fiscal year 2022 to help identify risk factors for ALS to reduce the number of new cases, connect patients with clinical trials, conduct surveillance of incidence and prevalence and collect biospecimens that will lead to a better understanding of who may develop ALS.
• National Academies of Sciences, Engineering and Medicine (NASEM) study: Congress should provide at least $1 million for an NASEM study to develop a plan and policy recommendations for what can be done by the government and all stakeholders to end ALS.
Permanently Extend Access to Telehealth for People Living with ALS: People with ALS must continue to have full access to safe, high-quality care via telehealth at home. Congressional expansion of telehealth has proven to be critically important for people with ALS throughout the COVID-19 public health emergency. Congress must permanently extend these expansions and ensure that all health care services important to people with ALS are covered by telehealth.
Provide High-Quality, Affordable, and Accessible Health Care: People with ALS must have health care that is high-quality, affordable, and accessible. This includes enhancing all aspects of health care coverage; protections for pre-existing conditions; reducing costs for Medicare coverage including home infusion and other specialized outpatient and in-patient medical care; durable medical equipment (wheelchairs, speech generating devices, breathing equipment); and all medications needed by people with ALS.
Increase Veterans Benefits for People with ALS and their Families: Veterans with ALS serving in any branch of the United States Armed Forces are more likely to develop and die from ALS. As a result of The ALS Association’s efforts, the Veterans Administration recognizes ALS as a service-connected disease and provides additional financial and health care benefits. The ALS Association will continue to fight to ensure that veterans living with ALS and their families receive the best health care and maximum benefits possible.
2021 Walk to Defeat ALS
Are you ready to Walk to Defeat ALS? We are!
The Walk to Defeat ALS® is an annual event held in Kansas, Missouri and Nebraska, as well as throughout the country. The Walk draws people of all ages and athletic abilities together to honor a loved one with the disease, to remember those who have passed and to show their support for the cause.
Our goal is to have teams raise awareness about ALS and fundraise to continue to support people living with ALS, discover more treatments, and provide hope for a cure.
Last year changed the way we did things, and The Walk to Defeat ALS was no different. In 2020, instead of gathering together, we selected one day and asked all our friends across the state to host their own mini walk celebration. We called it the 2020 Walk Your Way to Defeat ALS. We had companies gather their employees and walk on a warm summer Saturday morning. We had families gather for picnics and told stories of love and commitment. We had parades, caravans and decorated bicycles. Many people celebrated in their own personal way and shared pictures on social media. Despite the challenges, the fundraising from last year’s “Walk Your Way” helped The Chapter continue to provide free programs and services to people living with ALS and their families.
In 2021, we are hoping to have our Walks be a little closer to normal! The Walk to Defeat ALS websites are open and accepting registrations. As we have more information about Walk dates, times, locations and other safety measures, we will make them available. We hope you will consider joining us for this year’s Walk to Defeat ALS!
Daily Living Activities
There are a lot of little activities each of us do every day; things like buttoning clothes, brushing our teeth, or picking up a coffee mug. However, these common tasks become more challenging when you have ALS. You can make such daily living activities easier by adjusting how you do things or making small changes to items around the house. There are many different products or techniques you can use. Below are some tips you can use to make daily living activities easier:
Wrap the handles of forks, spoons, combs, toothbrushes, or other small utensils with foam, rubber, or tape to make them larger and easier to grip. You can use foam tubes and cut them into to the correct lengths, or wrap rubber bands or tape around the handles until they are a comfortable thickness.
Use lighter-weight utensils, such as plastic forks or plastic cups.
Choose a mug that has a large handle, allowing you to use your entire hand to grip it rather than just a couple of fingers.
Use cups with a ribbed rather than a smooth outer surface since a ribbed surface is easier to grip.
For zippers on clothing, attach a loop of string or a metal ring to the zipper tab. This will make the zipper easier to grab and easier to pull.
For clothes with buttons, you can remove the buttons and sew pieces of Velcro on instead: one piece where the button had been attached to the clothing, and one piece on the back side of the button hole. You can then sew the buttons back on, but on the outside of the button hole, making it look like the clothing is still buttoned shut.
Consider buying clothing that is easier to manage, such as pullover tops that don’t require buttoning, buttonless pants with elastic waists, and clothes that are a couple of sizes bigger than normal and are therefore easier to put on.
Use sweat pants that do not have elastic around the ankles, or remove the elastic, so that it is easier to slip your foot through the opening.
Form a washcloth pocket by sewing two wash cloths together on three sides. You can then slip your hand and/or soap into the pocket, allowing you to wash without having to grip the cloth.
Put toothpaste directly into your mouth before brushing, rather than trying to put it on the toothbrush first. You can hold the tube of toothpaste between your two palms and squeeze them together to get the toothpaste out, instead of trying to grip and squeeze with one hand. Also, leave the cap off the tube of toothpaste, so you don’t have to screw it off and on with each use.
Flip top lids, such as those on many brands of shampoo and lotion bottles, can be opened and closed using the edge of a table or counter top.
Choose a hairstyle that is easy to care for.
Take breaks and allow for periods of rest throughout your day to prevent fatigue.
The ALS Association Mid-America Chapter provides free resources to people living with ALS, one of which is an Aids for Daily Living (ADL) Kit. Designed to help with compromised fine motor skills, an ADL Kit can include the following items: button hook/ zipper pull, Universal Holder, PenAgain, Kennedy Cup, elastic shoelaces, flexible/extra-long straws, lipped plate, Dycem, key turner, right or left-handed scoop spoon and comfy grip tablespoon. Contact your local ALS Navigator for more information and items to assist you in daily activities.
FAQ: Accessing SSDI and Medicare
On December 22, the ALS Disability Insurance Access Act became law. The law became effective immediately on December 23, waiving the five-month waiting period before people with ALS can access Social Security Disability Insurance (SSDI) and Medicare benefits. This law was the result of four years of advocacy by the entire ALS community. Since the law was passed, The ALS Association has met with the Social Security Administration to ensure applications for SSDI are quickly processed and benefits start immediately for people with ALS. Below are some FAQs we are able to answer based on our meetings with the Administration:
1) What is the effective date for the SSDI waiting period waiver for people with ALS?
The waiver applies to any applications received on or after December 23.
2) What should people with ALS who applied for SSDI before December 23 do?
People who applied for SSDI before December 23, 2020 should cancel and resubmit their application if they have not already met the five-month requirement prior to the law’s effective date.
3) What are the eligibility criteria for people with ALS to receive SSDI?
The eligibility criteria for SSDI have not changed. Visit the Social Security Administration’s website for all eligibility criteria.
4) What are the first steps people with ALS should take to apply for SSDI?
The process for applying for SSDI has not changed, only how quickly a person living with ALS is determined to be disabled and how quickly they get payments.
5) Is the SSDI waiting period waiver retroactive?
No, the waiver applies only to SSDI applications from people with ALS on or after December 23, 2020.
6) People with ALS are eligible for Medicare benefits due to disability immediately following an application for SSDI due to ALS. Please explain what needs to happen once someone qualifies for SSDI so they can access Medicare right away?
The process and eligibility requirement for applying for Medicare due to disability has not changed. People with ALS automatically get Part A and Part B the month their SSDI benefits begin.
When a person’s SSDI application is approved, the Social Security system connects directly to the Medicare system the next day. When SSDI benefits begin for someone with ALS, their Medicare benefits will begin as soon as Medicare is able to process the information. The Medicare program will send information by mail.
7) Does the SSDI waiting period waiver for ALS cover any similar diseases, such as Primary Lateral Sclerosis, Progressive Bulbar Palsy and Progressive Muscular Atrophy?
No, the waiver only covers people with ALS that are eligible for SSDI.
The Social Security Administration is currently updating its policy procedures and materials for public consumption. This includes updates to SSA.gov to make the SSDI application process as clear as possible. The ALS Association will continue to work closely with Social Security to communicate any additional updates as the process continues. If you have questions, please contact your local Social Security Administration office. You can also call toll-free: 1-800-772-1213.
Social Work Month 2021
It’s Social Work Month! We would like to recognize the social workers in our Chapter’s clinics for the outstanding care and support they offer families dealing with ALS. Social workers are trained to help people address personal and systemic barriers to optimal living. They are employed to effect positive change with individuals, families, groups, and entire communities.
The role of the social worker in the ALS Treatment Centers is to provide you with information on services that enable you to have your care needs met. Whether it is personal care assistance, transportation, equipment needs, information on financial resources or respite care; the social worker helps you and your caregiver identify resources in the community to meet those needs. The social worker assists families with decision making concerning issues such as advance directives or finding appropriate care, as well as assisting to cope with a chronic illness or loss for both the patient and the caregiver.
Social workers are often unsung heroes, but they play an essential role in empowering people affected by ALS to live life to the fullest. During Social Work Month, we hope you will learn more about this amazing profession, say a kind word to social workers in your lives, and advocate for policies and legislation that benefit the profession and the populations they serve. In honor of Social Work Month, please consider registering to be an ALS advocate to help create a world without ALS, visit:
How can self-compassion help us when living with ALS?
By: Cheri Mathis, LSCSW, LCSW, ALS Navigator
Living with ALS brings a lot of uncertainty into your life. When faced with uncertainty, it’s normal to experience a roller coaster of emotions such as anxiety, frustration, anger, loss, grief, and even denial. You may feel like no one understands. There may be economic hardships that add to the worries and fear. As the disease progresses, the increased burdens from loss of functioning and demands of caregiving can magnify the sense of loneliness, isolation and suffering for both the individual with ALS and their loved ones. In the face of all this, it can be really easy to resort to self-judgment, catastrophizing and disconnection.
Self-compassion can help you cope better with these normal reactions to a really difficult situation. By exploring rather than avoiding negative experiences and feelings, you will ultimately be able to navigate the challenging circumstances and uncertainties more effectively. Most of us know how to give support, comfort and compassion to the people who need us. But how many of us offer that same level of compassion and care to ourselves? Treating yourself with the same compassion you offer others may help you get through challenging times without being overwhelmed by them.
The first component of self-compassion – mindfulness – is observing your thoughts and feelings as they are, without judgment and without trying to suppress or deny them. You cannot ignore your pain and feel compassion for it at the same time. But mindfulness also requires that you not be “over-identified” with thoughts and feelings, so that you get caught up in negative reactivity. Having a willingness to observe our negative thoughts and emotions with openness and clarity, helps us hold them in this mindful awareness and helps us disentangle from what’s bothering us.
The second component of self-compassion – common humanity – is an antidote to the isolation you may feel by encouraging awareness that others are similar to us, in that we all go through pain and suffering at times. When you recall that you’re not alone no matter what you’re going through, things become more bearable. When you reflect on your own distress, remind yourself, “Others feel as I do—I am not alone.” Consider reaching out to your ALS Navigator or connect with others who are living with ALS by joining one of our ALS Support Groups.
The third component of self-compassion – self-kindness – is about being warm, caring and understanding with yourself when you feel distress or inadequate, rather than ignoring your pain or responding with self-criticism. Your days and weeks will not always go the way you want. When you deny this reality or fight against it, your suffering increases in the form of stress and frustration. When you accept this reality with sympathy and kindness, you can be gentler with yourself thus reducing your suffering.
It may help to think through how you would respond to a friend or loved one confiding in you about their feelings. Then apply that tone and supportive coaching to yourself. Ask yourself what words do you need to hear to comfort or reassure yourself right now? For example, “I am going through a difficult time right now. It’s okay to take a break, and I don’t always have to be strong.” “I am doing my best, and that will have to be enough for now.” “Right now I am struggling. What do I need to do to honor my feelings and continue taking good care of myself?
In the face of ALS, self-compassion can be an important tool to help you navigate through the difficult times, and grant you the gift of grace which you all deserve. Of course, a single self-compassion practice will not immediately change your life. The fruit of self-compassion practice is learning how to hold your struggles and yourself in a loving embrace, just as we are, and treating yourself with the same kind and non-judgmental manner that you would treat someone whom you love. Difficult situations won’t magically disappear as a result of practicing self-compassion, but your responses to those experiences and feelings can and will change.
COVID-19 Vaccine Information
In January, The ALS Association and The National Organization for Rare Disorders (NORD) hosted a webinar about the COVID-19 vaccine. The information listed below was presented at the webinar. For more information about the COVID-19 vaccine, visit the CDC’s website, as well as your state's Department of Health website.
The 2 vaccines that were developed met characteristics that were set forth in guidance for safety and efficacy. The vaccine is 94-95 percent effective. In comparison, the influenza vaccine is 70 percent effective. There is not a preference between Moderna or Pfiezer.
FDA and CDC recommend that those who are high risk, get the vaccine early. The vaccine has very significant efficacy for people over the age of 65.
Make the choice with your individual healthcare provider. The FDA and CDC do not think there will be harm for people who have a rare disease. However, it is hard to study the efficacy of a vaccine in a rare disease because not a lot of people with rare diseases were involved in their studies.
Go to your state department health website to see where to get the COVID vaccine. Check each week for availability as it can change quickly. Each jurisdiction or state has flexibility with phases due to the demand and supply within those jurisdictions.
There has been reported discomfort after the second dose such as achy joints and a small number of people who get fevers. These symptoms usually only last a day or two.
It is unlikely that you will get the COVID vaccine from your primary care doctor as there are administration sites for the vaccine. All sites recommend waiting 30 minutes after you receive the vaccine to watch for an allergic reaction.
Severe allergic reactions occur in 1 in 100k people or fewer. The CDC is looking into this and the FDA recommends continuation on monitoring after receiving the vaccine. Don’t get the vaccine if you’ve had a known reaction to any of the vaccine components and tell your healthcare provider if you have a history of any allergic reactions.
Don’t get the vaccine if you have COVID-19. Wait until you get better and then get the vaccine.
There are other vaccines on the horizon. There are several in Phase 3 trials and there is a possibility of a 1 dose vaccine.
The FDA and CDC recommend that you continue to wear a mask after you receive the vaccine, in order to control the spread of COVID-19.
The mRNA COVID vaccine would not interfere with gene therapies. Please check with your healthcare provider for their guidance.
There are now multiple strains of COVID-19. The UK strain has a higher rate of spread and the current vaccines are effective. However, there is not enough research yet to know if the current vaccines will be effective for the South African strain. The CDC and FDA are researching this and they can alter the current vaccine, if needed, and get it expedited.
When a person living with ALS requires urgent or ongoing treatment in a hospital setting, they face a unique set of challenges. To assist with making your needs and wants known, and to support health care providers in their roles, there are some tools available for people living with ALS. If you are interested in receiving the following resources, contact your local ALS Navigator.
Planning ahead is imperative for everyone, regardless of your current health status. There are things you can do now to prepare for an emergency later. One resource that can be helpful is a Medical Information Packet. The packet contains documents that outline your specific care needs, along with general information about the care of someone with ALS. Completing advance directives is also important to address prior to any emergency. Advance directives help you make your treatment decisions known, and guide treatment when a patient cannot give informed consent or refusal. For more information about completing advance directives, and things to consider, contact your local ALS Navigator. Remember that it is not only the person living with ALS who needs advance directives; everyone should have their choices around medical care documented in case of an emergency.
When an emergency or trip to the hospital does occur, it is imperative that the person with ALS be able to communicate their disease state, key considerations for their care, and primary contact information.
Key Medical Information Cards have basic, quick access information along with a communication board and are small enough to keep in your wallet, purse or glove compartment. Having a Key Medical Information Card in more than one place, and always with your caregiver, insures there is always one available when needed. The Key Medical Information App, available for Apple and Android, is another way to store important information.
Contacting your local fire department and making them aware of your disease and your specific care needs (transfers, mobility, respiratory support, communication), as well as creating a “go bag” if you have to head out in an emergency are two other ways to plan ahead. And don’t forget, caregivers can become sick and need emergency care as well. Planning for backup care, with well-defined instructions, is important.
Contact your local ALS Navigator for these resources and more information about emergency preparedness.