Conference Schedule

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Part 1 

A description of the anesthetic challenges posed by patients with MPS with particular reference to airway management. 

Part 2 

How advances in anesthetic management have improved the safety of anesthesia for patients with MPS. 

Part 3 

How the evolution of treatments for patients with MPS has presented new challenges for anesthesiologists.

We will review the most up to date research on neuropsychological development and mental health and behavior from the last five years, and implications for families and caregivers.  

On March 22, 2023, the Canadian government announced “the first-ever National Strategy for Drugs for Rare Diseases, with an investment of up to $1.5 billion over three years. Following three years of multi-stakeholder consultations, the Canadian Organization for Rare Disorders (CORD) is proposing the establishment of a Canadian Rare Disease Framework which includes three pillars: Canadian Network of Rare Disease Centres of Expertise, Designated Pathway for Rare Disease Therapies, and Rare Disease Research Network. These are supported by two core platforms: Patient Data Platform and Patient Engagement Platform.

Only two options were available when Mark and Jeanne Dant were told their only child would pass away from a rare and untreatable disease within a decade; wait for nothing to change and accept the inevitable, or forge a new path for those diagnosed with rare disease by seeking partners who, like them, would find the courage to believe in the impossible. The Dants chose the to fight. Their journey to find treatment for their son Ryan has been documented on CBS 60 Minutes, the Today Show, CNN, Biography Magazine, Readers Digest in 13 languages worldwide, Golf Digest and numerous other television and news outlets across the US and around the world.  

A personal account of a family living for over 20 yrs with the trials and tribulations of an MPS life .

As the father to Henry Lucas, (MPS IIIC, Sanfilippo Syndrome) sleepless nights, anxiety, depression, mental health challenges and the overwhelming grief that can be unbearable – “Pressed but not crushed” is often a daily experience. I have been called through my faith to Chaplaincy to support others in grief. Walking with my son Henry, sharing his voice and supporting others through grief and trauma are the greatest challenges and greatest honors of my life.  Henry is a gift in our family’s walk and although a hard walk, it is a walk that has shown me the value of today and the importance of joy, hope and love. Looking forward to sharing.