Support Services

Kristin Larsen

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.

Speakers: 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.

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. 

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.

Our March webinar focused on talking with children about ALS. In April, we shift the discussion to how children cope with grief and loss. Despite the growing focus on persons living with ALS and their adult caregivers, children and youth remain the most hidden and least addressed in families with ALS, including discussions of grief, loss and death. This is often due to the fear many parents have in how to talk about death and dying, fear that what they say will scare or upset their child, but also when to say it. Many parents want to know, will my child be ok to grieve? What does grief look like in children and youth? Youth know things are changing, but they are not always sure what or how. But what we do know is that they want to hear it from their parents and family. 

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/

Speakers: 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.

Speakers: 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.

Speaker: 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.

Speaker: 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.