Spinal Muscular Atrophy (SMA) Awareness Month
By Lisa McPhee, Open Arms Content Writer | August 28, 2023
While preparing to write this article about SMA, I vividly recalled reading a young man’s story from of one of the patient communities I follow, Patient Voice. Patient Voice is an online platform for Canadian patients, their families, health care workers, and the public. Their goals are to educate, elevate and create a supportive community of empathetic humans. They share many amazing patient stories and one of those inspirational stories was Jared’s. Jared’s Story is very impactful and pertinent to this article as he is living with type III SMA. I would encourage everyone to have a look at the incredible people highlighted by this extraordinary community.
Every August, Canada joins the global community in observing Spinal Muscular Atrophy (SMA) Awareness Month. This dedicated month serves as an opportunity to shed light and foster understanding on this rare genetic disorder. It also highlights the significance of patient advocacy in garnering support, driving research, and developing policy changes. With patient led initiatives and advancements in medicine, SMA Awareness Month stands as a beacon of hope for individuals and families affected by the condition.
Understanding Spinal Muscular Atrophy (SMA)
SMA is a rare genetic disorder that affects the motor neurons in the spinal cord, leading to atrophy and muscle weakness. It is a progressive condition whose symptoms range from mild to severe. This impacts an individual’s ability to move, breathe and perform daily activities. While Spinal Muscular Atrophy has no known cure, recent breakthroughs such as gene therapy have offered renewed hope for patients and their families.
The Importance of Awareness
SMA Awareness Month plays an essential role in raising public awareness about this rare condition. With increased awareness comes empathy, understanding and creates more supports for this living with the condition. Families directly impacted by SMA often face not only medical challenges but also emotional and financial burdens. By spreading awareness, we create a more inclusive and compassionate society that advocates for the needs and rights of SMA patients.
Patient Advocacy: Driving Change for SMA Patients
Patient advocacy is a driving force behind the advancements in SMA research, policy changes and treatment. Advocacy groups, such as Cure SMA Canada and Muscular Dystrophy Canada, work tirelessly to amplify voices of patient and families, influencing decision-makers and researchers alike. These organizations work together with healthcare professionals, researchers, and policymakers to ensure that the unique needs of SMA patients are considered in treatment options, funding allocation and access to care.
Raising Funds for Research
SMA Awareness Month serves as a platform to raise funds for important research initiatives. Scientific breakthroughs in understanding the genetic causes of SMA have paved the way for ground-breaking treatments like gene replacement therapies. Through fundraising efforts, advocacy groups support research endeavors that aim to improve the quality of life for SMA patients and ultimately, find a cure.
Supporting Families Affected by SMA
SMA not only affects the diagnosed individuals, but also has a profound impact on their families. Caregivers often devote their lives to providing love and support to their loved ones with SMA. Awareness month offers an opportunity to recognize and honor these caregivers, highlighting their unwavering dedication and resilience.
Getting Involved: How You Can Help
- Spread Awareness: Follow Cure SMA Canada and Muscular Dystrophy Canada and use social media platforms to share accurate information about SMA. This can help combat misconceptions and promote understanding.
- Participate in Fundraisers: Join or organize fundraising events in your community to support SMA research and patient support programs.
- Support Advocacy Groups: Volunteer at, or donate to these organizations like Cure SMA Canada and Muscular Dystrophy Canada.
- Advocate for Policy Changes: Contact your local representatives to advocate for policies that improve access to care, support services and treatment options for SMA patients.
As we continue to learn more about this complex condition, our collective efforts will pave the way for improved treatments, enhanced support and, one day, a cure.
Spinal Muscular Atrophy Awareness Month in Canada is more than just a month-long observance; it’s a movement that empowers patients, families, and communities to come together and make a difference. By raising awareness, supporting advocacy efforts, and contributing to research initiatives, we can create a brighter future for those affected by SMA. As we continue to learn more about this complex condition, our collective efforts will pave the way for improved treatments, enhanced support and, one day, a cure.
How can Open Arms Advocacy Help?
We advocate for a wide array of patient issues from emergency room care, senior care, women’s health, mental health, and acute care to medical fatalities. We help patients get a second opinion, find a physician, place a complaint, or access medical documents. Open Arms also helps families of patients with guidance, support, and resources to get the answers they require.
If you need a patient advocate, please contact us at advocacy@openarmsadvocacy.com or fill out our intake form.