We Care January 28, 2025
Join Angie Lombardo as we kick off 2025 with our first We Care online session of the year! Whether you're a newly diagnosed family seeking guidance or a long-time member of our community with wisdom to share, your voice matters here. In these connections, we find not...
SickKids I-InTERACT-North program
SickKids, Toronto has expanded their innovative mental health support program, specifically designed with MPS families in mind. They understand the unique challenges and strengths of families impacted by MPS, and are committed to providing compassionate, tailored...
Mobility Aids
What To Consider When Purchasing Your (Or Your Child's) First Mobility Aid – A Parent’s Perspective At some point, there may come a time where you or your child will need to consider purchasing a mobility aid. What to do? What to buy? Crutches? Walker? Wheelchair?...
Mobility for Monika
Life on wheels presents unique challenges when combined with visual impairment, as Monika, living with MPS I knows firsthand. Her journey to obtain and master the use of a powered wheelchair reveals both the complexities of assistive technology and the determination...
Monika’s Assistive Technology Tips
In today's rapidly evolving technological landscape, assistive devices are opening new possibility for individuals living with disabilities. For Monika, the transition to assistive technology wasn't just a choice—it was a necessity. Unable to use a traditional...
Monika’s Inspiring School Homecoming
One of our members, Monika, is transforming challenges into opportunities for change. Living in Quebec with MPS I, she's turned her experiences into a powerful tool for advocacy. This spring, Monika returned to her old elementary school, armed with a mission to...
Amy Rusak MPS IVA
Amy Rusak Obituary December 30, 1978-July 17, 2024 With deep sorrow the family of Amy Louise Patricia Rusak, announce her peaceful passing on Wednesday July 17, 2024. Amy directed her personal care all her life and the services of MAID allowed her to leave on her own...
Natasha Kaweski (MPS IV)
In 1995, siblings Natasha and Damien were diagnosed with the rare genetic condition Morquio Syndrome, also known as Mucopolysaccharidosis IV (MPS IV). This journey has been filled with many challenges, but also incredible accomplishments and personal growth. ...
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...