Time is precious for all of us, but especially for those living with Mucopolysaccharidosis (MPS). This year’s International MPS Day theme—”It’s About Time”—highlights the critical importance of early diagnosis, timely treatment, and ongoing...
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...
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...
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 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...
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. ...
