Our stories
Hear from the SMA community as they share stories of empowerment, celebrate their individuality, and offer practical tools for daily life and relationships
Explore our stories
SMA My Way:
Your Canadian SMA Community
Be understood.
Be inspired.
SMA My Way is a community support tool for all those affected by SMA (Spinal Muscular Atrophy). From patients to caregivers, family and friends, our contributors are here to share their stories so we can empower one another to live our life, our way.
Stories
Life with SMA – your way
Navigating life with SMA can be challenging – but it can also be rewarding. Be empowered by our patient and caregiver stories of honesty, humour and strength as they celebrate their individuality.
Accessing public spaces and services like playgrounds, transit, and businesses can often be frustrating for people living with SMA and those who care for them. Sometimes using those spaces might require adaptive equipment or ongoing advocacy for more inclusive spaces. Read more about our contributors’ experiences as they share their stories of accessibility successes and challenges.
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Relationships with others are what keep us happy and healthy, oftentimes quite literally for people living with SMA. But there are also a number of misconceptions around those close relationships. Read more about how our contributors navigate relationships with family, friends, and romantic partners.
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For those living with SMA and those supporting them, finding time to take care of their bodies and their minds is an essential part of their everyday experience. That might mean a morning caregiving routine or an afternoon cuddle session with a pet: just know that there’s no right or wrong way to live your everyday.
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Resources for people living with SMA or for those who support them often focus on early life, meaning that crucial aspects of adult life go unaddressed. Whether it’s job hunting, buying a home, or applying for post-secondary education, find out how members of the SMA community approach adulting.
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Hobbies are more than just a pastime, they’re a key part of our identity and self-expression. Gaming, music, writing, travel: discover the unique passions that drive the members of Canada’s SMA community, including their perspectives on key supports like adaptive equipment.
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Parenting is commonly viewed as challenging, and this challenge can vary at different stages of a child’s life. Parenting a child with SMA can feel like an additional challenge, especially immediately after receiving a diagnosis. Fortunately, our experienced parents and caregivers have a thing or two to share about navigating family life, play, nutrition, and more while raising a child with SMA.
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You’ve landed a job. Congratulations! Now what? Navigating your career can be tricky and working while living with SMA comes with unique challenges. Learn how others in the SMA community manage the ups and downs of their careers and accessible workplaces.
Explore our storiesContributors
Our community is a collaboration of people across Canada and the USA who are impacted by SMA. Connect with patients and caregivers as they share their stories.
Get to Know usSPACES: The Music Video
SPACES is a first-of-its-kind musical collaboration created for everyone with a disability by the SMA community. Each creative component of the program - the song, music video and album art - was led by someone with SMA. It uses the universal language of music to elevate the many voices of this community and celebrate our individuality. The song was written and performed by singer and songwriter James Ian, the music video was directed by Hollywood consultant and filmmaker Dominick Evans, and the SPACES album art was created by artist Zarek Elizondo, all of whom are living with SMA. We’re excited to share this with the world.
