Living Stories Event Recap
On March 10, Rare Dementia Support Canada, in partnership with Nipissing University, welcomed community members, healthcare practitioners, researchers, students, and educators to Living Stories: A Moment with Rare Dementia.
The full-day event opened with In Our Words, an intimate public conversation hosted by Dr. Scott Russell, Chancellor of Nipissing University. Attendees were invited to listen and reflect as RDS Canada members Dave and Jenn Bigioni shared their family’s lived experience with rare dementia, including their experiences, insights, and hopes. Clinical neurologist Dr. Donald Weaver contributed meaningful information and context to the discussion.
Registered participants then engaged in Room for Thought, which offered one-on-one conversations with an individual living with a rare dementia or one of their supporting family members. These “living books” allowed participants to listen and learn directly from those living with the realities of rare dementia.
The Rare Expressions art installation featured incredible artwork by students from St. Joseph-Scollard Hall Catholic Secondary School. The artists were present to speak with event attendees and answer their questions. The art explored themes of family life, neurodegenerative change, support, and connection across generations. Attendees had the opportunity to engage with rare dementia in a visual and emotional way.
In the late afternoon, Dementia: Perspectives in Progress brought a research showcase rich with insight and inspiration. Dr. Donald Weaver spoke to the global landscape of dementia research, including prevention, diagnosis, therapeutics, and innovative approaches to long-term support and rehabilitation.
The day concluded with Piece by Piece, an original theatrical production written by award-winning playwright Allison Green in collaboration with RDS Canada. Performed by students from Almaguin Highlands Secondary School, the play explored themes of love, support, and human connection through powerful storytelling.
Living Stories: A Moment with Rare Dementia brought together lived experience, clinical knowledge, research, and creativity to deepen understanding of rare dementia and foster meaningful connection. We at RDS Canada extend our deepest gratitude to everyone who participated in and contributed to this important event. Your involvement and support were essential in bringing this day to life.