Friday June 21, 2023



Glacier Ballroom Foyer

4:00 – 6:00 pm 

Conference Registration

5:00 pm to 9:00 pm Glacier Room

6:30 pm to 9:00 pm
Selkirk room

Welcome reception - Cash Bar, hors d’ ouvres

Edith Lacroix - Book Reading and Art Workshop

Edith, a Canadian MPS Society member, will be doing a reading of her book Filipou and the Giant Apple, a story inspired by her son having Hunter Syndrome. This will be followed by an art project creating “Power Apples”.

Music Workshop: Create your own Maraca

Scheduled Family Photography

Families will be scheduled to meet the photographer for family photo shoots.


Saturday June 22, 2023

All the plenary sessions will take palce in the Glacier Ballroom


7:30 am – 8:30 am

Breakfast in Glacier Ballroom

8:00 am to 8:30 pm. Outside Rocky Mountain Room

9:00 am to 5:00 pm

Rocky Mountain/
Selkirk Room

Parent/Child Check-In

Child/Youth Program This fun and interactive day will consist of indoor activities and a spectacular outing to National Music Centre

StarGazer Patio (Access via Glacier Ballroom)

8:30 am sharp! Please don’t be late!

2023 National Family Conference Group Photo

Our 2023 National Family Conference group photo at 8:30am sharp.  Please don’t be late!

 9:00 am – 9:05 am

Glacier Ballroom

Welcome & Announcements

9:05 am – 9:25 am

Mucopolysaccharidoses Overview & Updates on Treatment & Clinical Trials

In this session we will review the available clinical treatment options for patients diagnosed with MPSs and the currently avilable clinical trial programs. We will review the screening process for eligibility to participate in clinical trials, and what to expect when participating in clinical trials.

9:25 am – 9:45 am

Clinical Trials, New Treatment Methods And Managing Expectations

9:45 am – 10:05 am

10:05 am – 10:15 am

Critical Decision Points in the Care of Patients with MPS and Orthopaedic Manifestations

Panel Q&A

Dr. Aneal Khan

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10:30 am – to 10:50 am

Anesthetic Care and the Evolution of Therapy For MPS Patients: A Shared Journey

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.

Marilyn Marchment headshot
Dr. Alastair Ewen

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10:50 am – 11:10 am

11:10 am – 11:35 am

Lysosomal Storage Diseases - Emerging Diagnostics and Therapies- Virtual Session

Pranesh Chakraborty – Newborn screening considerations for LSDs (20 minutes)
Billie Lianoglou – Prenatal diagnosis and current and emerging fetal therapies including in utero enzyme replacement therapy (25 minutes)
The aim of this plenary session is to provide an update regarding the considerations for timely diagnosis and therapy of patients LSDs. 
This session will first examine considerations related to newborn screening for LSDs. We will review updates regarding fetal diagnosis including sonographic findings, challenges related to fetal sequencing, and the impact of carrier screening. An overview of the ongoing phase 1 clinical trial of in utero ERT for patients with LSDs will be provided, as well as other potential prenatal therapies. 

Prenatal diagnosis and current and emerging fetal therapies including in utero enzyme replacement therapy - Virtual Session

Billie Lianoglou – Prenatal diagnosis and current and emerging fetal therapies including in utero enzyme replacement therapy (25 minutes)
15 minutes for Q&A
The session will provide an overview regarding the reproductive planning and testing options available for mucopolysaccharidosis. This includes both pre-conception considerations and options available for prenatal diagnosis. 

11:35 am – 11:50 pm

Panel Q&A

11:50 am to 12:00 pm

12:00 pm – 1:00 pm

Parent/Child Check-In before Outing to National Music Centre

Lunch in Glacier ballroom

1:00 pm – 1:20 pm

Delivering on Canada’s Promise of Value-Based Access to Drugs for Rare Diseases: How to Optimize $1.5 Billion Investment in Rare Diseases

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.

1:20 pm – 1:50 pm

Transition to Adulthood

1:50 pm – 2:10 pm

Behavioral Issues in MPS and Related Diseases

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.  

Dr. Eva Mamak

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2:10 pm – 2:30 pm

Neurocognition In MPS Disorders

Involvement of the brain in some form or other is present in all MPS disorders. In this talk, we will explore how neurocognitive function is measured, the known neurocognitive profile of each MPS disorder and the expected neurocognitive outcome with current therapies. Where available, we will also explore the potential impact of future therapies on neurocognition in MPS disorders.

Dr. Shailly Jain

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2:30 pm – 2:45 pm

Panel Q&A

3:00 pm- 3:45 pm

Canadian Pediatric MPS Registry Workshop (virtual)

Alison and Monica joined by John Mitchell, and Michal Inbar-Feigenberg (virtual), will introduce the Canadian MPS patient registry, which was co-developed by the Canadian MPS Society and the INFORM RARE research network at the Children’s Hospital of Eastern Ontario Research Institute. We will explain how the patient registry was developed, who is eligible to participate, what it means to participate, and how the registry data will be used.

3:45 pm – 5:00 pm

Pharmaceutical Company Updates

Takeda David Whiteman, Global Program Leader, Rare Genetic Diseases (virtual),
JCR Ryo Higurashi, Clinical Development Manager of JCR USA,
Ultragenyx – TBD
DenaliAngela LeDay, Senior Director, Medical Science Liaisons,
REGENXBIOLaura Pisani, Laura Pisani, MD, MBA Senior Medical Director, Clinical Development Lead

5:00 pm – 5:15 pm

5:00 pm – 6:30 pm

Parent/Child Check-Out

Updates from BioMarin, Takeda, JCR, Ultragenyx, Denali, Regenxbio,

Face Painting for Gala!

Updates from BioMarin, Takeda, JCR, Ultragenyx, Denali, Regenxbio,

6:30 pm – 10:00 pm

Born to Shine Banquet Dinner and Awards Ceremony - Glacier Ballroom

Updates from BioMarin, Takeda, JCR, Ultragenyx, Denali, Regenxbio,


Sunday June 23, 2023

All the plenary sessions will take palce in the Glacier Ballroom


7:30 am – 8:30 am

Breakfast in Glacier Ballroom

8:00 am to 8:30 pm

Rocky Mountain Room

9:00 am to 5:00 pm

Parent/Child Check-In

Child/Youth Program This fun and interactive day will consist of indoor activities.

9:00 am – 9:05 am

Glacier Ballroom

Welcome & Recap Canadian MPS Society

Updates from BioMarin, Takeda, JCR, Ultragenyx, Denali, Regenxbio,

9:05 am – 9:25 am

Finding Tomorrow - The Journey to Find Treatment For MPS

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.  

9:25 am – 9:45 am

MPS An Unexpected Journey

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

9:45 am – 10:05 am

The Importance Of Community In Our Grief Experience

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.

Marilyn Marchment headshot
Geoff Lucas

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10:05 am – 10:20 am


10:20 am – 11:00 am

Canadian MPS Society Annual General Meeting

11:00 am – 12:00 pm

WE CARE - Parent/Caregiver Support - Facilitated by Angie Lombardo

12:00 am – 1:30 pm

Lunch and Goodbye.

Children’s Program Feature Workshop – Music Therapy

We are excited to be collaborating with the National Music Centre, Studio Bell in Calgary to design a hands-on music therapy workshop, giving children the opportunity to learn new strategies for managing their condition. Our workshop will explore the impact of music therapy and how it can help children living with rare diseases to better cope with their unique needs. We will also provide an amazing opportunity for the children to perform at the gala that follows our conference. This will be a great chance for the children to demonstrate their talents and feel supported by their community.

The Canadian MPS Society conferences are quite simply the greatest thing the society does for its members. They’ve been the times we’ve been able to feel most ‘normal’ as a family and just enjoy the now.

The Byrnes

These family conferences are so important to my family, we share experiences, my kid gets to see other kids like him and not get judged. We laugh, we cry, but must importantly we just get each other.

The Rae Family

Being at one of the conferences gives that boost of energy and hope that we all need so desperately dealing with MPS.

Mary Nelis