Support Services

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.