About us
Our why, personal journey, and mission.
Our founder's journey of hope
ALS Care was born from a deeply personal experience with ALS. Seeing firsthand the struggles families face—from uncertainty to navigating a fragmented healthcare system—our founder was determined to create a space where no one has to face ALS alone.
Our mission is to empower families and care professionals with the resources, support, and community they need to navigate ALS with confidence. By sharing experiences and building connections, ALS Care fosters a community grounded in hope, knowledge, and strength.
Together, we’re here to improve the lives of those affected by ALS and those who care for them.
Our family's journey
September 2022: Diagnosis and rapid progression
After months of unexplained mobility loss, our dad was diagnosed with ALS. The condition progressed quickly, and within six months, he went from walking independently to being completely bedridden.
We were overwhelmed—not only by grief but also by a broken healthcare system that seemed to lack the guidance and support we desperately needed.
Struggling with gaps in care
Dad’s determination to live was unwavering, yet we encountered enormous hurdles: a fragmented healthcare system, a maze of agencies, and countless medical personnel, each offering fragmented guidance.
Without centralized resources, we found ourselves in survival mode, scrambling to understand and address Dad’s ever-evolving care needs.
February 2023: Confronting the hard realities
As Dad’s condition worsened, we rushed him to the hospital when he could no longer breathe on his own. While advocating for life-saving measures in the ICU, we learned that only 5% of Canadians with ALS choose a tracheostomy.
The doctors warned of financial strain, potential “locked-in syndrome,” and painted a grim picture of the road ahead, suggesting euthanasia as the best course of action.
We were left to grapple with the weight of these decisions on our own, navigating both financial and emotional challenges, often without clear, consistent guidance.
November 2023: Defying the odds
Refusing to give up, we chose the tracheostomy, determined to give Dad the quality of life he deserved. We fought to bring him home, securing the necessary medical equipment, training, and care team despite limited support from the healthcare system.
After spending several months in a long-term care facility, we were finally able to fulfill our goal and bring Dad back home, armed with hard-earned knowledge and an unbreakable spirit.
September 2024: Founding ALS Care Canada
Inspired by our journey with Dad, I founded ALS Care Canada to bridge the gaps we experienced. We aim to provide families facing ALS with the resources, guidance, and support we lacked, ensuring that no family endures the same isolation and uncertainty.
Today: Sharing hope and resources
ALS Care Canada is here to show families that even when the system offers little hope, it is possible to live a meaningful life with ALS.
With the right resources and support, we believe every family can find moments of joy, purpose, and connection, even in the face of ALS.
ALS Care team
Dedicated advocate, crisis solver, ALS Care leader.
Compassionate caregiver, thoughtful nurturer, gentle presence.
Support through shared experiences
Find strength in a community that truly understands. Access vital resources, share your story, and move forward with confidence. Whether you're living with ALS, a family member, or a caregiver, we’re here to guide, support, and listen.