In the News

Equipment for Daily Tasks

A diagnosis of ALS can mean progressive loss of independence and function with activities we take for granted. Fortunately, equipment is available to help perform and participate in daily tasks despite changes in strength, coordination, endurance, and balance.

For example, fully electric hospital beds are valuable for a variety of reasons. The head and the foot of the bed can be separately elevated for comfort, respiratory support, and pressure relief. The entire bed can raise and lower to make moving in/out of the bed easier. In addition, mattress toppers made of memory foam or with alternating air pressure systems can support comfort and prevent skin and soft tissue problems.

Bathroom Safety and Equipment

Wet surfaces, stepping over barriers, and moving from surface to surface can all increase fall risk, and activities such as showering/bathing can consume a large amount of energy. Every bathroom is unique, and a home safety evaluation can help determine appropriate options and advise on placement of grab bars, shower chairs, benches that allow the user to sit securely while entering/exiting a tub/shower, chairs designed to roll in/ out of showers, and added supports around the toilet. While historically not common in the US, a bidet can solve challenges with hygiene.

At some point, moving from one seat/location to another (transfers) can become difficult and/or unsafe. There are tools that make transfers safer for you and a caregiver: gait/transfer belts provide a secure and comfortable handhold, and pivot disks or Beezy boards allow movement without the need to take steps to pivot or lift your body off a sitting surface to scoot.

Mechanical and power lifts are designed to raise a person into supported standing or supported sitting from any surface, and can be wheeled to the next location, reducing strain on both the person with ALS and their caregiver. A variety of sling options ensure safety and comfort.

Physical changes and the resulting challenges can feel overwhelming! Tools are available to lessen the impact of many ALS symptoms on daily life. Your ALS Navigator and ALS clinic team can help determine which tools may be useful to you! 

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Staff Spotlight

 Hello! My name is Katie Schauer. I’m joining The ALS Association with many years of experience as a social worker. I graduated with my Bachelor’s of Social Work degree from James Madison University in Harrisonburg, Virginia, and my Master’s of Social Work degree from University of Kansas in Lawrence, Kansas.

My social work experience has included working with individuals with cancer; hospice care; and behavioral health case management for managed care. I have lived in Kansas City for over 20 years and when I’m not working, I enjoy spending time with my family including my three children, along with reading and running.

 Katie joined The ALS Association last month as the ALS Navigator for individuals living with ALS and their families located in Missouri (Kansas City). Tara Dhakal is now the Care Services Manager and supports the entire Care Services team serving Kansas, Nebraska, and Missouri. To contact Katie, call (913) 374-1277 or email her at katie.schauer@als.org.

The CoxHealth ALS Clinic of the Ozarks

 Congratulations to the team at CoxHealth ALS Clinic of the Ozarks, for meeting the highest quality of standardized care in the management of ALS and becoming a Certified Treatment Center of Excellence!

“We are delighted to have met the requirements for becoming a Certified Treatment Center of Excellence,” said Lisa Alexander, President of CoxHealth Foundation, “and are thankful for continued support from The ALS Association in helping provide the very best care for people living with ALS in southwest Missouri.”

“The care that people receive here is a model for other parts of the country and I’m proud that we are able to recognize CoxHealth for its outstanding multidisciplinary approach to treating people with this devastating disease,” said Colleen E. Wachter, Executive Director of The ALS Association Mid-America Chapter.

The team was presented a special plaque in recognition of this amazing accomplishment at The Walk last month! Congratulations CoxHealth!

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The SSDI Application Process

The ALS community earned a hard-fought victory last year, the ALS Disability Insurance Access Act became law, waiving the five-month waiting period before people with ALS can access Social Security Disability Insurance (SSDI) and Medicare benefits. 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. Below are some tips for the SSDI application process for people living with ALS.

Checking your eligibility is the first step in applying. Eligibility requirements can be found at: https://www.ssa.gov/benefits/disability/qualify.html, or by contacting your local Social Security Administration’s office. Visit the Social Security Administration website: https://www.ssa.gov/ for an accurate and secure place to check specifics of your eligibility.

If you find that you are eligible for SSDI, you can apply for Disability benefits online at https://www.ssa.gov/applyfordisability/, or you can apply by calling the toll-free number, 1-800-772-1213, between 8:00 a.m. and 7:00 p.m. Representatives can make an appointment for you to apply. It is recommended to document calls including who you speak with, their credential number, as well as the date and time.

Having all your information and documents already gathered can help the application process go a bit more smoothly. The SSA suggests you have the following information at hand:

Information About You:

  • Your date and place of birth and Social Security number.

  • The name, Social Security number and date of birth or age of your current spouse and any former spouse. You should also know the dates and places of marriage and dates of divorce or death (if appropriate).

  • Names and dates of birth of your minor children.

  • Your bank or other financial institution’s Routing Transit Number and the account number, if you want the benefits electronically deposited.

 

Information About Your Medical Condition:

  • Name, address, and phone number of someone we can contact who knows about your medical conditions and can help with your application.

  • Detailed information about your medical illnesses, injuries, or conditions.

  • Names, addresses, phone numbers, patient ID numbers and dates of treatment for all doctors, hospitals and clinics.

  • Names of medicines you are taking and who prescribed the medications.

  • Names and dates of medical tests you have had and who sent you for them.

* It’s imperative to share with every SSDI representative that ALS is a presumptive disability as that will help the representative recognize urgency of the application.

Information About Your Work:

  • The amount of money earned last year and this year.

  • The name and address of your employer(s) for this year and last year.

  • A copy of your Social Security Statement.

  • The beginning and ending dates of any active U.S. military service you had before 1968.

  • A list of the jobs (up to 5) that you had in the 15 years before you became unable to work and the dates you worked at those jobs.

  • Information about any workers’ compensation.

**Important Notes**

  • Do not delay applying for benefits because you do not have all the documents. The SSA will help you get them.

  • There is a form to fill out if you want them to hold a percentage rate of taxes out. If you do not withhold, you will pay the government all the taxes at once. It is different per state.

 

Contact Your ALS Navigator for any questions or call The ALS Medicare Resource Line for SSDI support at: (844) 244-1306.

Medicare and Open Enrollment

The Medicare Annual Election period (AEP) is an open enrollment period running annually from October 15th to December 7th. During this time, you can switch to, drop, or add a Medicare Advantage (Part C) or Prescription Drug (Part D) plan or add Medicare GAP coverage. This is an important time-frame that gives current Medicare beneficiaries time to evaluate their options and ensure that the coverage they select makes the most sense for their health challenges and their wallet in the year ahead.


Don’t assume something that was covered last year will continue to be. Plans change from year to year, so be sure to check that your providers, pharmacies, and prescriptions will be covered.


You can seek help through a State Health Insurance Assistance Program (SHIP) which offers free insurance counseling for Medicare beneficiaries. Find your local SHIP at https://www.shiphelp.org/.

The ALS Medicare Resource Line

The ALS Medicare Resource Line is a valuable resource designed to provide individualized case management assistance for those diagnosed with ALS. The ALS Medicare Resource line provides assistance with navigating eligibility and enrollment in disability benefits and overcoming insurance coverage and financial burdens that impact access to care.


At no cost to you, The ALS Medicare Resource Line’s case managers are here to help address any roadblocks to access and affordability.
Request help at https://als.pafcareline.org/ 24 hours a day. Or contact The ALS Medicare Resource Line at (844) 244-1306.

The National ALS Registry

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 Every person living with ALS in the United States can enroll in the National ALS Registry. The National ALS Registry is perhaps the single largest ALS research project ever created and is designed to identify ALS cases from throughout the entire United States.

Most important, the Registry is collecting critical information about the disease that will improve care for people living with ALS and help researchers learn what causes the disease, how it can be treated and even prevented.

For more information about The National ALS Registry, visit: www.als.org/research/als-registry.

The ALS Equipment Loan Program

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By: Michelle Fredrick, PT

Manager of Equipment and Assistive Technology, The ALS Association Mid-America Chapter

The ALS Association Mid-America Chapter accepts donations of Durable Medical Equipment (DME), as well as adaptive devices to lend, free of charge, to individuals with ALS. Items can be loaned while awaiting insurance approval or if insurance coverage is not available.

This lending program is made available by generous donations of gently used equipment from individuals and families impacted by ALS.

If you choose to donate, The ALS Association Mid-America Chapter will provide you with a donation acknowledgement for your tax records.

We accept the following types of equipment, which must be less than 5 years old and in good working condition.

Mobility Aids:

  • Walkers

  • Canes

  • Power, Manual, and Transport/Travel wheelchairs

  • Power Scooters (three and four-wheeled)

  • Wheelchair cushions

Communication:

  • Speech Generating Devices (eye-gaze or touch)

  • iPads/tablets

  • Head mice/other mice/ keyboards

  • Voice amplifiers

  • Low-tech/ready access communication boards/books

Bathroom Items:

  • Commodes

  • Power toilet assists

  • Shower chairs

  • Tub transfer and sliding benches

  • Toilet safety frames

  • Rolling shower commode chairs

  • Grab Bars

Transfer Devices:

  • Transfer lifts and slings

  • Pivot discs

  • Beasy boards or sliding boards

Bedroom Items:

  • Bedrails

  • Over the bed tables

  • Bed cradle/ blanket support

Miscellaneous:

  • Some adaptive devices for use as ADLs (Aids in Daily Living)

  • Lap trays

Items we don’t accept:

  • Supplemental nutrition

  • Feeding supplies

  • Respiratory equipment

  • Medications

  • Incontinence products

  • Textiles/upholstered/ other items that cannot be correctly/fully sanitized

To inquire about borrowing a device, contact your ALS Navigator. You also could inquire at your ALS clinic appointment, or email Michelle directly at michelle.fredrick@als.org.

Equipment and Quality of Life with ALS

A diagnosis of ALS can mean progressive loss of independence and function with activities we take for granted. Fortunately, equipment is available to help perform and participate in daily tasks despite changes in strength, coordination, endurance, and balance.

If strength and coordination of hands and/or arms is an issue, there are tools to make daily tasks easier:

  • Foam to make thin handles thicker and easier to grasp, or special silicone handles can be applied to anything from pens to toothbrushes.

  • There are eating utensils that can be bent to accommodate less movement of the hand and wrist.

  • Cups are available that prevent spills if tipped/dropped, and long, flexible straws allow drinking with no need to pick up a cup at all.

  • Tools are also available for specific tasks such as buttoning or zipping. A number of popular clothing brands have started to offer lines of clothing that require less dexterity to dress fashionably and comfortably.

 

General mobility can become an issue. Depending on each person’s particular challenges, a suitable device can be suggested by your physical therapist.

  • AFOs (ankle-foot orthoses) can help prevent trips and falls if your toes drag or catch on the floor.

  • A cane, standard walker, or rollator walker (the type with 4 wheels, a seat, and hand brakes) can provide added stability and even a sturdy seat when a rest break is needed.

 

For longer distances, or as fatigue and weakness make walking less safe, wheelchairs are valuable. Different models can come with 4 small wheels (fold easily, pushed by another person), two large and two small wheels (allow user to use hands to help push and can be pushed by another person), tilt-in-space (can change sitting position and allow for more support built into the chair – pushed only by other person) and power wheelchairs.

Power wheelchairs can be controlled in a variety of ways and can be customized to provide physical support, pressure relief, and position changes. Newer power wheelchairs can even connect with smart-home functions to control TVs, lights, and other devices!

People often assume that a wheelchair, especially a power wheelchair, is inappropriate for a person that can walk. Conserving energy whenever possible, however, is an especially important consideration for individuals with ALS. Resting when you can helps save energy for activities that you enjoy (or must do), and for greater portions of your day.

Physical changes and the resulting challenges can feel overwhelming! Tools are available to lessen the impact of many ALS symptoms on daily life. Your ALS Navigator and ALS clinic team can help determine which tools may be useful to you! 

The Walk to Defeat ALS: Team Captain Spotlight

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Andrew Kim coped with the loss of his grandfather to ALS by doing the Ice Bucket Challenge with his closest friends in middle school. Every year since then, he has joined the campaign to increase awareness about this disease and has solicited donations for research in hopes of finding the cure that wasn’t available for his grandfather. Now, as a senior at The Pembroke Hill School in Kansas City, Missouri, he will again serve as team captain for AK 4 ALS!

Andrew works tirelessly in fundraising for The Kansas City Walk to Defeat ALS. Last year, he designed one of the most recognizable logos for his team’s shirts. He sends out numerous personal emails to his family and friends to promote The Walk, and he raises awareness of the disease in his sports community through his Instagram page: @ak4als.

Andrew’s network of teammates, friends, family and local community come together every year and join in fundraising and walking at the annual walk. Last year, AK 4 ALS drew attention for his efforts as he was recognized as the #2 Friends & Family Team in the 2021 Kansas City Walk to Defeat ALS! Andrew has high hopes this year to beat the $16,436 he raised last year, and to support the efforts of the scientific community to discover treatments and ultimately find a cure for ALS.

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Recognizing the Need for In-Home Help

 Hiring in-home assistance can help you cope effectively with the everyday challenges of living with ALS, as well as relieve some of the pressure on family caregivers. But sometimes, it can be difficult to make the decision to bring on additional support. Here are some guidelines that can help you with the decision process.

Arranging for in-home help can give both you and your family members the support you need to live an enjoyable and full life. Still, many people put off hiring in-home help until an emergency or change in condition forces the issue. Being alert to changes in your (or your loved one’s) condition and abilities can help you to proactively recognize that assistance is needed, so you can arrange for help before a crisis occurs. Here are some red flags that may indicate it is time to hire outside help:

For the person with ALS

  • Are you having increased difficulty accomplishing basic personal care tasks, such as bathing, brushing your teeth, dressing, or using the toilet?

  • Are you having increased difficulty preparing meals or eating?

  • Are you finding that you need more assistance to get out of bed or a chair, or to move from place to place?

  • Are you having increased difficulty communicating?

  • Do you worry about your safety when you are alone?

  • Do you need help managing your medications?

  • Are you finding it difficult to complete routine household tasks?

 

For family caregivers

  • Are the additional responsibilities related to caring for your loved one starting to take an emotional or physical toll on you?

  • Are you finding it difficult to manage caregiving responsibilities in addition to your other responsibilities, such as those related to work, caring for children, or maintaining the home?

  • Are you neglecting your own needs because there are simply not enough hours in the day?

  • Have you noticed a change in your loved one’s emotional status? For example, is he or she showing signs consistent with depression, such as becoming withdrawn or unusually irritable, losing interest in activities that used to be pleasurable, or sleeping or eating more or less than usual?

  • Have you noticed that your loved one is having trouble managing his or her medications?

  • Does your loved one need skilled care beyond what you can provide (e.g., ventilator assistance; physical, occupational, respiratory, or speech therapy)?

  • Has your primary relationship with your loved one been lost to your caregiving relationship?

  • Do you worry about leaving your loved one alone?

 

If you answer yes to one or more of these questions, it may be time to consider some additional in-home help. To obtain support and assistance in determining what type of help would be most beneficial to you and for additional caregiving resources, contact your ALS Navigator.

Also, ask your ALS Navigator about subscribing to Care Matters, The ALS Association’s new quarterly newsletter designed to bring you the most up to date information, resources and stories relating to care for people living with ALS and their caregivers.

The ALS Association Care Connection

The impact of an ALS diagnosis is profound. It’s not uncommon for daily tasks, such as meals, laundry, and children’s activities, to be less of a priority when providing care for a loved one with the disease.

Caregivers may feel defeated by the growing list of tasks they’re no longer able to manage. And it’s often hard to know when and how to ask friends and neighbors for help. For those who want to offer a helping hand, it’s difficult to know just what’s needed and how to make a difference.

Now, when someone asks what they can do to help, the answer is “give me your e-mail address so I can provide access to our ALS Care Connection page.” ALS Care Connection is a private online calendar that can be used to support the entire family – by organizing volunteers to take care of some of the tasks that families describe as “falling through the cracks.”

ALS Care Connection is a simple online tool that helps organize the community of people who want to help. It coordinates their efforts to more efficiently support families impacted by ALS. To learn more about this tool and its features, review our step-by-step guide to getting started, visit: https://alsa.lotsahelpinghands.com/get-started

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The Walk to Defeat ALS Team Week

Team Week is August 8th – August 15th! The week will be filled with five days of fun, easy and interactive challenges aimed at helping us put a big dent in our Walk goal! 


This year, everyone registered for The Walk to Defeat ALS can participate in Team Week, not just Team Captains! Starting on August 8th, all registered walkers will receive an e-mail each morning, with the details of the day’s challenge and the amazing prizes available. Every day during Team Week, you’ll have an opportunity to shine as you raise money, rally with your team, and compete for some fantastic prizes. You play a crucial role in the fight against ALS! 


Visit the your local Walk to Defeat ALS Facebook page for Team Week reminders and updates. Don’t miss this chance for great prizes — and bragging rights! It’s going to be a great week! 


To register for The Walk to Defeat ALS, visit: www.walktodefeatals.org.

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Local Spotlight: Sports Radio 810 WHB

Congratulations to Sports Radio 810 WHB for 100 years in Broadcasting! To celebrate 100 years, Sports Radio 810 is hosting an event with a portion of the proceeds benefiting The ALS Association Mid- America Chapter.

Thank you Sports Radio 810 for your support and a special thank you to Steven St. John! Steven has been on 810’s air for over 20 years. He serves on the ALS Association Mid-America Chapter Board of Directors and has been involved in Chapter events for many years.

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By: Missy Addison, BSN, RN, ALS Navigator

Traveling can be stressful and difficult for anyone, but when you have a physical disability, it can be even more so. Traveling can still be a rewarding experience for people with ALS. A little extra time spent planning can make all the difference.

When making a reservation, book as far in advance as possible. It is also important to know what is allowed on a plane, ship, or train. All air, cruise and rail lines have different rules, so it is recommended to ask questions when booking your tickets. Travel agencies may not have the most up-to-date information, so it’s best to call a hospitality provider directly to make your arrangements.

Some battery-powered items, such as laptops and ventilators, or liquids, such as medicine or pre-made liquid food, are now somewhat considered threats to security. It is recommended that you bring information verifying your condition to substantiate those items are medically necessary. Make sure to inform your carrier about any special needs at least 48 hours in advance. A couple of days prior to leaving for your trip, be sure to reconfirm all travel arrangements to ensure that your needs will be met once you arrive at the airport, harbor or station.

Persons with ALS, who are planning to travel by airplane, should determine if they are safe to travel. Air pressure is different in an airplane, and you may need a special test to ensure that you are safe to fly.

It is recommended to purchase travel insurance in case any of your items are lost or damaged. Furthermore, it is important to carry your living will with you, in the case of emergency. You should have it, and any other pertinent documents, translated if necessary.

Traveling with a companion is also highly encouraged. Depending on your physical needs, it is probably a good idea to travel with a trusted friend, relative or caregiver. There are some things that travel attendants will be unable to do – such as helping to lift or lower you from your seat to a wheelchair or to the toilet.

It may be possible – availability permitting – to borrow equipment from an ALS Association organization at your destination. That organization may also be able to help you coordinate with local companies for things like accessible vehicle rentals.

The toll-free Transportation Security Administration (TSA) Cares Help Line for Travelers with Disabilities telephone number is 855-787-2227. The TSA recommends calling at least 72 hours ahead of your travel date for “check point support.” In addition, many specialized services and tips can be found on the website: DisabledTravelers.com, including an index of internationally located travel agencies that specialize in coordinating arrangements for travelers with special needs.

For more information about traveling with ALS, contact your local ALS Navigator.

Traveling with ALS

2022 Capitol Hill Day

On June 22, 320 participants from 46 states completed more than 300 virtual meetings with members of Congress and their staff. The meetings come on the heels of our annual Advocacy Conference – held virtually due to visitor restrictions in Congress. Advocates asked Congress to support and pass critical legislation that will help the ALS community, including funding for ALS research and making expanded access to telehealth permanent. Participants included people living with ALS and their family members as well as ALS Association staff. Personal stories and experiences about living with ALS helped make the case for more funding for ALS research and the continuation of telehealth. 

The meetings come on the heels of our annual Advocacy Conference – held virtually due to visitor restrictions in Congress.

Throughout the conference, nationally recognized ALS experts shared the latest research on ALS, the value of multidisciplinary care, the importance of early detection and nutrition, and innovations to improve the quality of life for people living with ALS.

Recordings of the conference will be posted soon. For more information about this year’s conference, visit: www.als.org/advocacy-conference.

Why Walk?

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Sometimes, it can feel as though you are alone in this fight but when attending The Walk, you’ll realize that you are in fact not alone. You will see that there are hundreds of other people walking, fundraising and spreading the word for the same reason as you- to find a cure.

On Walk day you can expect to arrive at the venue on a beautiful sunny day (although we don’t control Mother Nature, a little positive juju never hurt) to a tent full of friendly staff and volunteers prepared to register you and explain the day’s events. Get there early to take advantage of the food and fun. The Walk route is lined with beautiful celebration signs with photos in honor of those who are living with ALS today, as well as photos in memory of those whom we have lost to ALS. We would love to honor you or your loved one with an In Celebration Sign on the Walk Route at the event. Contact your local office for more information. 

If you haven’t experienced the magic of this day, you will be moved when you watch the giant sea of people walking together for the same important cause – to end ALS. We challenge you to join us in this fight and Walk to Defeat ALS!

Can you believe The Walk to Defeat ALS is just around the corner? Every year around this time, our staff is on the phones, meeting with team captains and working hard to organize a meaningful event for all who attend.

Lou Gehrig Day 2022

Last month, baseball fans took part in the celebration of the second annual Lou Gehrig Day, an event to help spread awareness and raise funds for people living with ALS and their families.

While ALS was originally identified in 1869 by the French neurologist, Jean-Martin Charcot, it became more widely known internationally on June 2, 1941, when it ended the career of one of baseball’s most beloved players, Lou Gehrig. To this day, ALS is still commonly known as Lou Gehrig’s disease.

In stadiums across the nation, teams offered people living with ALS and their families special game day experiences. Locally, the Kansas City Royals and the Omaha Storm Chasers celebrated Lou Gehrig Day. Baseball players sported “4 ALS” on their jerseys throughout the night, informational videos about ALS and Lou Gehrig were shown to thousands in the baseball stadiums, and local families and their loved ones living with ALS were honored.

The awareness raised from this event is truly immeasurable for the ALS community. Thank you to everyone who joined us for Lou Gehrig Day in Omaha and Kansas City!

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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: https://www.neals.org/als-trials/search-for-a-trial/.

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 the 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 www.clinicaltrials.gov 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 alstrials@neals.org 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

Currently Enrolling

  • Healey ALS Platform Trial: This study has one open medication arm, Trehalose. Key inclusion criteria are onset of symptoms less than 36 months and SVC greater than 50% (assessed during screening visit). NCT04297683 KU Medical Center and Nebraska Medicine 

  • 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 the research team will attempt to enroll approximately 30 participants. Participants will know that they are on OAA. NCT04204889 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. 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 5031 is a phase 3 study of a pill based medication called Reldesemtiv. The key inclusion criteria include symptom onset of less than 24 months and an FVC of 65% or greater. NCT04944784 KU Medical Center

  • PLS Natural History: This is a natural history study to learn more about PLS and build a foundation for future PLS research. There are six visits over the course of two years. KU Medical Center and 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.

  • 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

  • KCMD Biomarker: An observational study with focus on evaluating biological factors associated with ALS. There are four visits for the duration of one year. These visits can coincide with standard clinic appointments. KU Medical Center

Upcoming Studies

  • PTC Therapeutics is a phase 2 study of PTC857. The key inclusion criteria are SVC 60% or greater and an ALSFRS-R of at least 34 or higher. NCT05349721 KU Medical Center

  • AMXLYX 0035 EAP will open to a limited number of participants. The key inclusion criteria is greater than 36 months from symptom onset. NCT05286372 KU Medical Center

  • Tofersen EAP is for patients with documented SOD1 gene mutation. NCT04972487 KU Medical Center

Contact your local ALS Navigator for more information about local research. 

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.

  • Stem Cells: Stem cells have the ability to divide for indefinite periods in culture and give rise to multiple specialized cell types. They can develop into blood, neurons, bone, muscle, skin and other cell types. They have emerged as a major tool for research into the causes of ALS, and in the search of new treatments.

For more information about ALS Research Focus Areas, visit: www.als.org/research.

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Energy Conservation: Strategies & Tools

 By: Molly Dennert, Occupational Therapy Doctoral Student

What is energy conservation?

Energy conservation is a method of modifying or adapting your daily routines to increase efficiency, decrease fatigue, and continue participating in all the activities you enjoy doing. Everything you do from the moment you wake up until the moment you go to sleep uses energy. The goal of energy conservation is to allow you to have energy for the things you want to do, not just the things you need to do. You get to choose where and how you use your energy!

How do I conserve my energy?

  1. PRIORITIZE your daily tasks. What is the most important to you? What needs to be done now, and what can be saved for later?

  2.  PLAN out your activities to avoid doing too much in one day. Gather everything you need for a task prior to beginning. Use assistance from family or friends.

  3. PACE yourself. Listen to your body! Rest before you become fatigued. It is okay to ask for help.

  4. POSITION yourself in a way that is comfortable and limits fatigue. Sit to complete tasks when you can. Limit bending and reaching when possible. Maintain an upright and supported posture for more effective breath control.

Energy conservation can be a difficult concept to work into your everyday life. A good way to measure the effort required for a certain task or activity is to evaluate how you feel after completing it. For example, if you are fatigued following an outing to the grocery store to the point that you require a two-hour nap to recover, that activity likely used up a lot of energy.

Examples:

  • Gather all meal preparation items before beginning cooking a meal

  • For housework, make a list of the jobs you want to do and complete one each day

  • Fill shopping bags half full to make them easier to carry

  • Sit in a chair while showering, cooking, or dressing if you fatigue during these activities

A large factor in energy conservation is finding the right tools to help you with a task. Tools as well as strategies offer opportunities to conserve energy for participation in activities that are meaningful to you. It is important to remember that tools can help you maintain your independence, even if participation looks different than it did before.

Examples of Tools:

  • A long straw to eliminate the need to lift a cup to your mouth

  • Elastic shoelaces to turn tie up shoes into slip-on footwear for ease of dressing

  • A universal holder to build up the handle of a utensil if your hands fatigue quickly

 

Consult your occupational therapist and ALS Navigator for suggestions on what assistive devices or equipment may be useful to you. Strategies and tools can support you to make your everyday activities easier and allow you to use your energy on the things that bring you joy.

National Nurses Week

National Nurses Week is May 6th-12th. We would like to highlight the incredible nurses in our Chapter’s ALS clinics, for their care and support they provide to individuals living with ALS. In honor of all the amazing nurses, we asked a few from our local ALS clinics, to explain their role in caring for a patient with ALS.

 

Lisa Potthoff, The ALS Clinic of the Ozarks: “The role of ALS Clinic nurse is a role of passion, endurance, and many hats. We stand as advocates for our patients, we facilitate getting the things that they need to help with mobility, breathing, feeding, etc. We are proud to provide education to the patients and their care partners. We wrangle the team and share their story with each team member, ensuring that each member of the interdisciplinary team understands the concerns that the patient has expressed, what they want, and of equal importance, what they do not want. We stand with the patients and their family throughout their journey without bias or judgement. We are blessed to share tears with them, both sad and happy. As a nurse in the ALS Clinic, I get to share in the care of beautiful souls, and for that, I am blessed to be a member of this team.”

Karissa Burr and Lisa Mandolfo, The ALS Association Certified Treatment Center of Excellence at Nebraska Medicine: “After a patient is diagnosed with ALS they are provided with information and education. We meet with the patient and get them scheduled in our ALS clinic. On ALS clinic day, we help to coordinate the flow of the clinic and try to be sure there is little wait time for the patients between meeting with the different disciplines. Our goal is to make patients, their families and caregivers feel they have all of the tools and information necessary. We are honored to help guide and assist patients with their needs, questions and/or concerns as they go through their journey with ALS.”

Brian Ghafari-Naraghi, The ALS Association Certified Treatment Center of Excellence at Missouri Health Care: “I have the honor and privilege to work with patients and families learning to live with ALS. I am here for support, education, resource finding and any other way I can help. My goal is to make getting the care you need as simple as possible.”

Thank you to all the nurses who serve the ALS community!

Five Facts to Help Maintain Good Nutrition

While good nutrition is important for everyone, it can be very challenging for people living with ALS to maintain a healthy diet due to chewing and swallowing difficulties often experienced at some point in the disease progression. Improper nutrition can cause people to feel tired, lower their resistance to infection, speed the loss of muscle mass, cause constipation and lead to a host of other health problems.

A nutritionist or speech therapist can help people living with ALS and their caregivers put together a healthy diet that works to meet each person’s specific needs. In general, though, when supplied with the right education and information, planning and preparing healthy meals the whole family will enjoy can be easy and stress free.

Below are some important facts to know and tips on maintaining good nutrition despite having ALS.

1. Protein provides the building blocks for muscle and many other tissues in your body. Excluding water, about three-quarters of our body’s solid mass is made up of protein. If you don’t consume enough protein, your body may break down muscle tissue to supply the quantity it needs. While protein is very important for people living with ALS, it can be difficult to consume the necessary amount. Meat, including beef, poultry and fish, eggs, beans, nuts, milk and cheese are all-natural sources of protein.

2. Fiber can help you maintain a healthy weight and improve your digestive health. Fruits, vegetables and whole-grain breads and cereals are all good sources of fiber. Unfortunately, fibrous foods can also be hard for some people living with ALS to swallow. To make sure you’re getting enough fiber in your diet, consider eating fruits or vegetables with a soft consistency, such as bananas, canned peaches, cooked beans, applesauce or other fruits that have been pureed.

3. Most people need a half-gallon of water each day, or eight 8-ounce cups of liquid. Dehydration can be another problem for people with swallowing difficulties, and getting enough water is every bit as important as getting enough food. If you’re having trouble swallowing liquids, you can get the water you need by drinking thick liquids or adding thickening powder to your favorite beverages. Eating food with a high-water content, such as canned fruits or pudding can also be a big help for people living with ALS. People with mobility challenges may limit their liquid intake to decrease trips to the bathroom. Strategies and equipment for easier transfers and independence are available.

4. Getting enough calories daily is critical for people living with ALS. Getting enough calories to maintain a healthy weight can be challenging for people living with ALS. Though many people think it’s healthy to diet or limit fat intake, for people living with ALS it’s much more important to make sure you’re getting enough calories to fuel your body and prevent it from breaking down muscle tissue. If you quickly feel full or grow tired when eating, try having six to eight small meals each day instead of three large ones. You may also consider a feeding tube to supplement your calorie intake throughout the day.

5. Vitamins and minerals help boost the immune system, support normal growth and development, and help cells and organs do their jobs. While there’s not yet clear evidence that vitamin supplements can help the body fight ALS, it’s been suggested that vitamin E may be beneficial to people living with ALS, but the evidence is inconclusive. However, it’s still a good idea to consider taking a daily multivitamin and perhaps an additional vitamin E supplement. Some vitamins come in either solid or liquid form, so you can choose whichever is easiest for you to consume.

 

For more information about maintaining good nutrition while living with ALS, contact your ALS Navigator.

ALS Advocacy Fly-In

Leaders in the fight against ALS held 250 virtual meetings with members of Congress last month, to press for an exponential expansion of federal funding for ALS research and programs next year, as part of The ALS Association’s annual Fly-in Conference.

More than 50 advocates and 60 ALS Association representatives from communities across the country attended the meetings virtually. Advocates met with Congress to discuss what is needed to make ALS a livable disease and to ultimately find treatments and cures.

As in past years, the meetings coincided with the kick-off of the appropriations process on Capitol Hill, as lawmakers begin to prepare the budget for the next fiscal year beginning in October. The Association is seeking to boost funding for ALS research across the federal government to find new treatments and cures.

Our asks during the meetings included:

At least $100 million to fully fund the ACT for ALS Act, which was signed into law in December 2021. This includes $25 million in funding for the Rare Neurodegenerative Disease Grant Program for clinical grants for ALS and other diseases (in FDA’s Orphan Products Grants Program). In addition, $75 million in funding for expanded access grants for research on therapies for ALS (at NIH).

• Increase funding at NIH for ALS research – at least $135 million

• Increase funding for the Department of Defense ALS Research Program – at least $60 million

• CDC National ALS Registry and Biorepository – at least $10 million

This represents meaningful increases in funding from the current budget, which includes $27.5 million for ACT for ALS programs, $40 million at the DOD ALS Research program and $115 million at NIH.

On March 11th, more than 250 virtual congressional meetings were held during the Association’s annual Fly-In. 50 people living with ALS and their families, supported by 60 ALS Association staff, lobbied key members of the House and Senate. Local Chapter staff members and ALS advocates participated in Kansas, Missouri, Nebraska virtual congressional meetings (pictured above).

April is Occupational Therapy Month

Occupational therapists are key members of the mobility team for a person living with ALS. As ALS progresses, most people gradually lose their ability to use their hands and their arms as their muscles weaken.

The ALS Occupational Therapist (OT) provides assessment and treatment for the skills needed to perform activities of daily living. They focus on their patient’s ability to transfer, dress, bathe, groom, toilet, and feed themselves. They assess upper limb range of motion and strength and provide recommendations for upper limb and neck bracing. In addition, they perform home safety evaluations and are able to perform wheelchair assessments.

Together, the Physical Therapist and Occupational Therapist help families negotiate the transition of their loved one from independence to dependence, providing caregiver training, teaching transfer techniques, and offering recommendations for durable medical equipment and assistive devices.

Research Matters Newsletter

Stay up-to-date by subscribing to our monthly e-newsletter, Research Matters. You’ll receive information about the latest ALS research discoveries, key advances in technology and new treatment approaches taking place in clinical trials. To sign up for the e-newsletter, visit: www.als.org/research-matters

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