Nipissing U launches national rare dementia support service  

North Bay, ON –Today, Nipissing University celebrated the official launch of Rare Dementia Support (RDS) Canada, a national support service for people living with rare or young onset dementia led by Dr. Mary Pat Sullivan, Professor of Social Work and Social Gerontology. 

Five to 25 per cent of people diagnosed with dementia are living with a rare, inherited or young onset dementia. RDS Canada will provide a virtual space for those affected, offering access to information, tailored individual and group support and guidance, and connection with others affected by similar conditions. The team includes dementia practitioner specialists, researchers, educators and individuals with lived experience through an Advisory Circle. 

“There is a significant gap in supports available for people living with a rarer or young onset dementia,” said Sullivan. “RDS Canada will help narrow this gap for people living in Canada by connecting them with the information about their disease, resources and practitioners to support their wellbeing.” 

The establishment of RDS Canada was made possible following a $400,000 grant from The Hilary & Galen Weston Foundation received by the University earlier this year. The service, delivered via Nipissing’s campus, is offered in partnership with Rare Dementia Support (RDS), University College London (UCL), in the United Kingdom.  

“We are proud to host this leading national service at Nipissing University and of the work Dr. Mary Pat Sullivan and her team are undertaking that will benefit countless individuals in need of this specialized support,” states Dr. Kevin Wamsley, President and Vice-Chancellor, Nipissing University. 

“It is exciting to see the Foundation’s investment and interest in brain health being realized in this way, and to know that this service will have such a far reaching and positive impact on the lives of those affected by rare and young onset dementia,” said Jeffrey Coull, Hilary and Galen Weston Family Foundation.   

“I’m so pleased to share in this milestone occasion with Mary Pat and the entire RDS Canada team, and look forward to continued collaborations to advance support services for those affected by rare and young onset dementia around the globe,” said Sebastian Crutch, Professor of Neuropsychology, Dementia Research Centre, UCL, and Lead, Rare Dementia Support. 

Following the launch announcement on Monday, December 5 at the NUSU Student Centre, attendees were invited to take part in a poetry installation developed through the Rare Dementia Support Impact Study. The installation, titled “Where to Begin”, consists of 36 poems offering personal accounts of what it is like to live with dementia. The poems are a result of a collaborative project led by Sebastian Crutch of the University College London. The exhibit is open to the public at the NUSU Student Centre (221 College Drive, North Bay, ON) through December 21, 2022. 

For more information about RDS Canada, visit  


Media Contact 
Carly Johnston 
Communications Officer  
Nipissing University 
(705) 474-3450 ext. 4035  

Photo Caption  

(L-R) Back: Dr. Veronika Williams, Associate Professor, Nipissing University and Collaborator, Rare Dementia Support Canada; Dr. Sebastian Crutch, professor of Neuropsychology, Dementia Research Centre, UCL, and Lead, Rare Dementia Support; Dr. Mary Pat Sullivan, Professor of Social Work and Social Gerontology, Nipissing University and RDS Canada Lead; Dorothy Larkman, Assistant Professor, Nipissing University School of Social Work; Jen Gordon, Support Manager, Rare Dementia Support Canada; Ernest Payette, Rare Dementia Support Canada member; Dr. Jeffrey Coull, Hilary and Galen Weston Family Foundation. Front: Caroline Payette (front), Rare Dementia Support Canada member.