Wednesday, May 27

3 PM ET/ 2 PM CT/1 PM MT/ 12 PM PT 

Caregiving carries emotional, mental, and physical demands—often over a long and unpredictable journey. This session shares insights from the MSU Carers Survey, highlighting the unique challenges faced by those caring for loved ones with Inclusion Body Myositis (IBM).

Led by Marlene and Rod Jansen, this session brings both data and lived experience together. Marlene, wife and caregiver to Rod, played a key role in the development and delivery of the survey and will walk through its key findings and what they reveal about the realities of caregiving.

Building on these insights, Rod will introduce the concept of a “Care Map”—a simple, visual tool to help you identify the people, resources, strengths, and gaps within your caregiving network. Participants will learn how to create their own Care Map to better understand and support both the caregiver and the person receiving care.

A retired telecom professional based in southern Ontario, Marlene now dedicates her time and energy to caregiving, advocacy, and animal welfare. Her special connection to the Understanding Myositis organization comes from her role as care partner for her  husband who lives with inclusion body myositis (IBM), and riding the rollercoaster from diagnosis to adaptation. She also cares for her 92-year-old mother.

Her journey as a caregiver began in 2008 when her  brother suffered a massive stroke. Since then, she has become deeply familiar with the challenges faced by people with disabilities and their families. This firsthand experience has made her a passionate advocate for accessibility, inclusion, and the often-overlooked needs of caregivers.

At home, she shares life with her husband, daughter, a devoted dog, and a spirited cat. As a lifelong animal lover and champion for the underdog—whether two-legged or four—she strives to create compassion and understanding wherever she can.  She adores animals and has worked as a volunteer with various rescue and rehabilitation organizations.  She also provides assistance to the drug addicted and homeless women in her  community.  

In her  downtime she loves to crochet and confesses to spending too much time on Facebook.   

Rod Jansen is a retired telecommunications professional. He worked in Canada, USA and the Middle East. An avid tennis player, he started falling for no reason on the tennis court and then at home.

In July 2021, after several years of falling and experiencing progressive weakness in his legs and arms, he was diagnosed with Inclusion Body Myositis (IBM).

Rod currently serves as Vice President of Myositis Canada.