Support Services

Catherine Lomen-Hoerth, MD

Some people with ALS may develop changes in their thinking and behavior. These changes can be overlooked at times.    

Our March ALS Learning Series webinar, “Cognitive Changes in ALS,” on discussed how ALS affects cognitive functioning. Dr. Lomen-Hoerth covered the latest research on cognitive changes, offered tips on managing these symptoms, as well as strategies to support people living with ALS and their families who are impacted by these changes.  

Dr. Catherine Lomen-Hoerth is a neurologist and director of the ALS Center at University of California San Francisco (UCSF) Medical Center. She is particularly interested in research involving electrophysiological and genetic predictors in ALS, along with the overlap of ALS and frontotemporal dementia.  

Watch the webinar here.

View the slide here.

Additional resources: Guide to Cognitive and Behavioral Changes

ALS & Caregiver Self-Care Guide

Rachael Marsden, nurse consultant and care centre coordinator

A person living with ALS may not feel comfortable addressing relationship, intimacy and sexual health changes that occur during their ALS journey with their healthcare providers. Although their ALS care team is always there to help, they may not feel fully equipped to assist them.

The good news is that there are tips for managing their physical connection with their loved one through adaptations and open communication. Join us for our ALS Learning Series with Rachael Marsden, Nurse Consultant and Care Centre Coordinator for the Oxford MND Care & Research Centre in Oxford, United Kingdom.  Rachael will provide guidance for people living with ALS and their ALS care teams to help start conversations and offer solutions for intimacy and sexual expression.  

Watch the webinar here.

Dr. Paul Mehta

 Dr. Mehta will discuss how to join the National ALS Registry, what information they collect and why, and the type of research the registry is conducting.  A Q&A session will follow the discussion.

ALS research depends on people living with ALS to join the National ALS Registry. Every individual’s story can contribute to our understanding of the disease, its causes, and how to fight it. The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to Mitsubishi Tanabe Pharma America and the Gilbert and Jacqueline Fern Foundation for sponsoring this webinar.

Watch the webinar here.

View slides here

Anne Lidsky, PhD

Presenter: Anne Lidsky, PhD

Caregivers undergo changing dynamics and burnout when caring for a loved one. It’s important for others to maintain a more understanding and loving perspective so that they can cope effectively.

Learn about healthy and helpful coping skills that are so important while living with the challenges of ALS. Dr. Lidsky talks about how needs change as the disease progresses, and at the same time, recognize our ability and strength to adjust to a New Normal.

Watch the webinar here.

View slides here and resources here.

Jeff Powers, Program Manager

Presenter: Jeff Powers, Program Manager at Team Gleason

With the advancement of technology and home automation systems, tasks that were previously difficult for people living with ALS, such as turning the lights on and off in your home, have become much easier.

Team Gleason’s mission is to have people living with ALS remain as independent as possible no matter where they are in their ALS journey. Jeff Powers discusses what home automation is, provide suggestions on how to implement current available technology, along with ways that Team Gleason can help assist you with the home automation process.

Watch the webinar here.

View slides here.

Anne Marie Doyle M.A., CCC-SLP

Presenter: Anne Marie Doyle, M.A., CCC-SLP

Have you ever thought about Voice or Message Banking, but don’t know where to start?

Voice and message banking for people living with ALS can be an emotional, overwhelming, and seemingly complicated task to navigate. However, it doesn’t have to be. In this webinar, Anne Marie discussed the differences between voice banking, message banking, and double dipping, as well as, how to get started, what equipment is needed, and the future of voice recognition technology.

Watch the webinar here.

View slides here.

Jinny Tavee, MD

Presenter: Jinny Tavee, MD, National Jewish Health

Integrative holistic therapies can play a major role in helping people feel better, especially when they are dealing with neurologic diseases. Dr. Tavee discussed how people living with ALS and their caregivers can benefit from nutrition, exercise, and mind-body therapies. Questions, answers, and discussions followed the program.

Watch the webinar here.

View slides here.

Kathleen Holt, JD

Presenter: Kathleen Holt, JD, Center for Medicare Advocacy

Many people living with ALS qualify for Medicare to provide their health insurance after they are no longer working full-time. This presentation examined Medicare eligibility, enrollment, coverage, costs, payment assistance and considerations when choosing between traditional Medicare and a private Medicare Advantage plan. Questions, answers and discussion followed the program.

Watch the webinar here.

View slides here.

Presenters: Terry Savage, The Money Lady® and Kerry R. Peck, JD, Peck Ritchey, LLC

This webinar guides people living with ALS and their loved ones through easy-to-understand actionable steps for securing a financial future and optimizing health care. A diagnosis of ALS makes planning for the future more important than ever. These discussions are not easy, but taking the time to gather information and think about your values is a powerful gift for yourself and to your family.

Watch the webinar here.

Presenters: Robert Statam, Sr. and Winston Woodard III, Paralyzed Veterans of America

This webinar focuses on the PVA providing navigation services for veterans and advocating for veterans living with ALS so that they can receive VA benefits such as disability and caregiver compensation; grants for home and vehicle modifications; medications and supplies; and home health care and equipment. A veteran living with ALS, Shelly Hoover, also discusses how the VA benefits have benefited her.

Watch the webinar here.

View slides here. (note dollar amounts are from April 2022)

Watch Shelly Hoover from I AM ALS Veterans Team here.

Presenter: Becca Schroeder, MOT, OTR/L, Northwestern Memorial Hospital

This webinar focuses on how ALS may impact your daily routines and how an occupational therapist can offer tips to make daily living a little easier. The webinar teaches about devices for getting through your daily routine and suggestions on ways to increase your independence. You also learn about different types of adaptive equipment for eating, drinking, toileting, bathing, oral hygiene, grooming and recreation.

Watch the webinar here.

Presenters: Dr. Kvarnberg, Clinic Director of the ALS Interdisciplinary Clinic at Edward Hines, Jr. VA Hospital & Bob Ives, veteran living with ALS

This webinar discusses the link between military service and the approach that the VA takes in caring for veterans as well as provides useful information to veterans with ALS and their caregivers wanting to know more about VA benefits and care for veterans living with ALS. Bob Ives also provides his point of view as to how his relationship with the VA benefited him greatly.

Watch the webinar here.

Watch Bob Ives' full interview here.

Presenters: Esmeralda Vázquez, OTD, OTR/L, ATP and Jeannette Wider, MS, OTR/L, of Shirley Ryan AbilityLab

This webinar discusses symptoms of mobility weakness and how ALS affects mobility. You will learn about a variety of mobility aids to assist you in your daily life and learn what information is important to know when modifying your home for use of a power wheelchair. The webinar also discusses custom wheelchair set up, ramp accessibility, vehicle accessibility and minor home modifications that will allow for safe mobility in the home and community. Lastly, you will be provided with information about the Les Turner ALS Foundation's new 'ALS & Mobility' guide and 'ALS & Home Modifications' guide.

Watch the webinar here.

View our ALS & Mobility guide here and ALS & Home Modifications Guide here.

Presenter: Lauren Webb, LCSW, Director of Support Services and Education, Les Turner ALS Foundation

This webinar shows you how to use My ALS Decision Tool^TM to EXPLORE quality-of-life considerations, REVIEW treatment options, and PREPARE for conversations with your doctors. The webinar also discusses the development of My ALS Decision Tool^TM as well as the benefit of shared decision-making tools to improve health outcomes. People struggling to make decisions about their own ALS care will find this information to be helpful and empowering.

Watch the webinar here.

View all Information Guides here.

Presenter: Martha L. Twaddle, MD, FACP, FAAHPM, HMDC, Waud Family Medical Director for Palliative Medicine & Supportive Care at Northwestern Medicine

This webinar covers how to talk about end of life, what to say, and when to say it. It discusses the differences between Palliative Care and Hospice Care, as well as their benefits, services offered, when to seek out this care, and what you need to know before signing-up for hospice services.

Watch the webinar here.

View Dr. Twaddle's presentation here.

Presenter: Lisa Kinsley, MS, CGC, Genetic Counselor Resource Manager for Northwestern Medicine’s Neurology Department, and Assistant Professor of Neurology at Northwestern’s Feinberg School of Medicine

This webinar helps in understanding the multiple factors that go into genetic testing and how they play a role in your family planning. It explains genetic testing and reviews the family planning options available for those who are interested in reducing the risk of passing on a genetic disorder. Aside from the implications that genetic testing for a familial ALS gene can often bring up, this webinar also reviews the biological, ethical, and financial factors involved in genetic testing.

Watch the webinar here.

Presenters: Janet Bischof-Rosario, OTR/L and AnneMarie Doyle, MA, CCC-SLP, Shirley Ryan AbilityLab's Assistive Technology Center

This webinar will identify solutions for communication and use of smart phones, tablets, and computers as ALS can affect your speech and ability to use these devices. This course will focus on making communication as easy as possible throughout this difficult journey, using cutting-edge technology and collaboration with each person’s team including their family, caregivers, therapists, physicians, and vendors.

Watch the webinar here.

View our ALS & Communication Guide here.

Presenter: Kristin Larsen, MA, Speech-Language Pathologist at the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine

This webinar discusses ways ALS can impact your speech and swallowing. The webinar focuses on early identification of symptoms, provides helpful tips including tongue and respiratory exercises along with voice banking and communication aid options. Knowing what to expect as your symptoms change can help you make well-informed and timely decisions to communicate and swallow safely for as long as possible.

Watch the webinar here.

View our ALS & Communication Guide here.

Presenters: Brittany Hitson, MS, RD, LDN, Northwestern Medicine, Prentice Women’s Hospital, Clinical Nutrition and Dominique Kosk, MPH, RD, LDN, CNSC, Clinical Nutrition Services, Northwestern Memorial Healthcare

The purpose of this webinar is to help you better understand how ALS impacts nutrition. Each person may experience their own unique set of challenges that may change over time when it comes to achieving adequate nutrition and maintaining their weight. This webinar will discuss various ways to maintain good nutrition through the foods you consume, the way you prepare your meals, how you stay hydrated and the additional support you may need when you are unable to eat enough to meet your body’s needs.

Watch the webinar here.

View our ALS & Nutrition Guide here.

Presenter: Colin Franz, MD, PhD, Assistant Professor in Physical Medicine and Rehabilitation and Neurology, Shirley Ryan AbilityLabs and Northwestern University

Current treatments for Amyotrophic Lateral Sclerosis (ALS) are lacking, but more are on the horizon.  Naturally we look to new ALS research studies for hope and solutions, but the information in scientific papers is often very hard to decipher. Dr. Colin Franz will teach you through a basic approach to reading scientific papers with specific examples taken from ALS clinical research. This talk is intended to provide the tools necessary for people living with ALS, their friends and family members to read scientific papers and increase their engagement with the ALS research community.

Watch the webinar here.

Presenter: John M. Coleman III, MD, Associate Professor, Division of Pulmonary & Critical Care Medicine and Department of Neurology at Northwestern Medicine

Dr. Coleman will help you to better understand how ALS impacts breathing. Some people may start having trouble breathing soon after their ALS diagnosed. For others, it can happen after years of living with ALS. This webinar discusses respiratory management in ALS with an emphasis on clinical symptoms, diagnostic testing and therapeutic interventions. Education on therapies for secretions (like mucus or drool) and airway clearance will also be a focus of his presentation as well as “non-invasive” therapies that can be used to help people living with ALS breathe comfortably. 

Watch the webinar here.

View our ALS & Breathing Guide here.

Presenter: Melinda Kavanaugh, PhD, MSW, LCSW, Associate Professor, Social Work and Director in Social Welfare at the Helen Bader School of Social Welfare at the University of Wisconsin-Milwaukee

This webinar integrates Dr. Kavanaugh’s clinical expertise and many years of research with children and youth in families with neurological disorders, to guide families in starting the conversation about death and dying, grief and loss, and how to get support for these conversations. Additionally, Dr. Kavanaugh discusses the several books she has written, using the children’s own words to help guide these conversations. If you have a child, grandchild or work with families living with ALS, this webinar is geared for you.

Watch the webinar here.

Additional resources can also be found at https://uwm.edu/ycare/resources/

Presenter: Melinda Kavanaugh, PhD, MSW, LCSW, Associate Professor, Social Work and Director in Social Welfare at the Helen Bader School of Social Welfare at the University of Wisconsin-Milwaukee

Despite the growing focus on persons living with ALS and their adult caregivers, children and youth caregivers, or “young caregivers,” remain the most hidden and least addressed in families with ALS. This is often due to the fear many parents have in how to talk about ALS, what to say and most importantly when to say it. Yet, what we do know is that youth are hearing more and accessing more online – thus it is critical for parents and families to start the conversation. This webinar integrates Dr. Kavanaugh’s clinical expertise and many years of research with children and youth in families with neurological disorders, to guide families in engaging with children and youth. Additionally, Dr. Kavanaugh discussed the several books she has written, using the children’s own words to help guide these conversations.

Watch the webinar here.

Additional resources can also be found at https://uwm.edu/ycare/resources/

Presenters: Nicole Sammartino, MS, Community Education Manager, Easton Stevenson, LCSW, Support Services Coordinator and Kathy Grandfeldt, a member of our Les Turner ALS family who lost her husband, Ronny, to ALS

Our February ALS Learning Series webinar focused on the impact that the global pandemic has had on our mental and emotional well-being as well as how we grieve the death of a loved one.

We explore the stages of grief, factors impacting our grief response, techniques and coping strategies, self-care, and how the Foundation can support you through your grief process. Information is presented on the Foundation's two bereavement support groups for spouses or partners of people who have lost a loved one to ALS.

Watch the webinar here.

Presenters: Karen Steffens, RN, CHPN, CCM, ALS Support Services Coordinator, Les Turner ALS Foundation, and Rosie Riley, a person living with ALS

My ALS Communication Passport to Quality Care is a tool for individuals living with ALS and their families. The 12-page Passport document helps caregivers, nursing and medical staff better understand the care needs and preferences of people living with ALS. During this 20-minute webinar, Karen will walk participants through the Communication Passport, how to fill it out, and when to use the tool. This will be followed by a short conversation between Karen and Rosie Riley, a person living with ALS, who has benefited greatly from filling out the Passport.

Watch the webinar here.

Presenter: Featuring Benjamin Joslin, CCRC, Clinical Research Project Manager, Northwestern University Feinberg School of Medicine

During this discussion, Benjamin provided a basic understanding of ALS research and inform patients about how they can participate in clinical trials at the Les Turner ALS Center at Northwestern Medicine.

Watch Benjamin's webinar here.

Presenter: Lisa Kinsley, Senior Genetic Counselor at Northwestern University’s Department of Neurology

Lisa’s webinar covered genetics basics as well as the inheritance patterns of both sporadic and familial ALS and the process for genetic testing for both symptomatic and pre-symptomatic familial ALS patients.

Watch Lisa's webinar here.