Loïc Bydal – MPS IV
Loic passed away in February 2024. He was a courageous and determined being and touched the lives of many. Here is is letter to you all recounting his journey in his own words. The original French version is posted below the English translation. "Good evening to all,...
Elovic MPSII
C’est difficile pour moi de dire précisément ce que le mot “Maman” veut dire dans de telles circonstances. Quand Elovic était jeune, il disait maman à toutes les femmes qu’il croisait en leur prenant leur main. Si bien que les femmes riait en lui disant, “Je ne...
We Care March 2024
Spring Is Here! Let’s Spread Seeds of Hope! Join us this March for our monthly We Care virtual gathering celebrating the incredible strength of our MPS community. We'll kick things off by sharing humble brags about our brave MPS warriors and their triumphs, no matter...
We Care February Is For Fathers: Wear Your Heart on Your Sleeve
Join us for a Men's only session of 'We Care', Balancing work, being a Dad, Step Dad, Husband, Partner, coach can be hard enough- add in the complexities of MPS....we can feel like we are doing this alone, like we are on an island, but we aren't. Join us to hear from...
Using Easy To Understand Language In Clinical Trial Summaries For Participants
CommuniKIDS – a toolkit to help researchers convey clinical trial results back to participating youth and their families in plain easy to understand language.
We Care January – Finding Peace Along the MPS Journey
Start the New Year off making friends and allies - a reminder that registration is open for the first We Care Session for 2024. Receiving a rare disease diagnosis such as MPS brings immense change and challenges. Alongside the medical complexities, families must...
Denali MPS IIIA Clinical Study
December 12, 2023 Dear Sanfilippo syndrome Type A Community, We are pleased to share that a Phase 1/2 clinical study of DNL126, an investigational enzyme replacement therapy designed to address the behavioral, cognitive, and physical symptoms in Sanfilippo syndrome...
Joseph, MPS IIIB
We are relatively new to MPS, we only found out in April 2023. Shortly after I was speaking to the doctor that diagnosed Joseph, my son, the doctor had mentioned the MPS society of Canada. Needless to say I reached out not wasting anytime. My wife encouraged me to do...
Felix-Antoine MPS II
My name is Édith and my son, Felix-Antoine, has Hunter Syndrome (MPS II). Since many years now, the Canadian MPS Society has helped me connect with other families who has been living the same reality. For example, we attended the Family Conference in Montreal in 2017,...
Anaïs (MPS IVA)
Our 8-year-old daughter Anaïs has Morquio syndrome. Each additional year spent at her side makes us proud as parents. She is wise and mature beyond her years, with strengths like perseverance, determination, and living each day fully without fear. But as time passes,...