How to Support Those Affected by Spinal Muscular Atrophy in Canada

mother holding baby
| 6 min read Crowdfunding

Spinal Muscular Atrophy in Canada, known as SMA, is a debilitating and many times fatal disease, affecting one in 6,000 babies. With no known cure and few and incredibly expensive treatment options, parents are turning to GoFundMe to raise the money needed to access the life-saving treatment. Donations have flooded in from across the country to support these children.

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What is SMA?

SMA is a progressive genetic disease that attacks motor neurons. SMA mostly affects babies and children making it hard for them to use their muscles, activities, like sitting up, crawling, feeding and breathing, becomes progressively more difficult. If left untreated, most babies don’t make it to their second birthday.

Spinal Muscular Atrophy Type 1, also called Werdnig-Hoffman disease, is the most common type. Patients of this type typically experience symptoms between birth and six months old. And while there is no cure, there are treatments available that can significantly improve quality of life and survival.

In 2019 the FDA approved a revolutionary treatment for SMA Type 1. The gene-therapy treatment shows promising and transformative results if administered before the patient turns two. But the treatment comes at a hefty price tag for Spinal Muscular Atrophy in Canada.

In the ultimate race against time, Canadian families are having to raise $3 million to gain access to the drug.

Why is so much support needed in Canada?

This treatment is some of these babies’ only chance to make it to their second birthday. For SMA Canada, families are turning to loved ones, their communities, and even strangers to raise $3 million before their daughter or son turns two. You can do your part and donate to fundraisers for families affected by SMA.

Ways you can help

Create more awareness about SMA in Canada

Reach out to local media – Media can be a powerful tool to raise awareness for a cause and reach a wider audience. For example, media outlets across Canada shared the story of Lucy, a BC baby fighting for her life after an SMA Type 1 diagnosis, ultimately driving donations to her GoFundMe fundraiser, even catching the eye of celebrities, encouraging signatures for her petition, and generally raising awareness for the devastating disease.

Host a sports event – A little competition can go a long way in helping raise money. Whether hockey or soccer, pair a fundraising event with your favourite sport. Add a buy-in to be a part of the tournament with all funds going towards either an SMA charity or a local family.

Spread the word on social media – Start with your inner network and use your social media channels as a platform to raise awareness, encourage your friends and followers to share, and share with your community your connection to the cause.

Sign the petitions – Parents with children diagnosed with SMA are calling on their governments:

  • Eva’s family launched a petition directed at the Minister of Health Canada to approve Zolgensma in Canada. Join the 40,000 and counting people in the fight here.
  • Lucy’s family launched a petition directed at Health Canada to approve Zolgensma. Join the 60,000 and counting supporters here.
  • Kaysen’s family launched a petition directed at the Alberta Minister of Health to gain access to Zolgensma ahead of Kaysen’s second birthday. Join the 35,000 and counting supporters here.

Get involved with the SMA community

Whether you or someone you know is affected by the disease, you are a part of the healthcare industry, or just simply want to help – you can look into joining and volunteering with Cure SMA Canada. Membership entitles you to receive their newsletters, updates on research and events in your area. You also can become connected to other families and individuals affected by SMA.

Donate to individuals or charities

Individuals

GoFundMe has a centralized hub for all individual SMA fundraisers on our platform. Here are the stories behind Spinal Muscular Atrophy in Canada:

  • Born in April of 2020, the Van Doormal’s knew something wasn’t quite right with their new daughter Lucy. During a regular newborn checkup, Lucy showed a decrease in both muscle tone and infant reflexes. Not knowing what could be causing these symptoms they were quickly referred to a wide array of specialists at BC Children’s Hospital  One month later, the BC family’s life would be turned upside down after Lucy was diagnosed with SMA Type 1. The family embarked on a new journey, and had to admit to themselves they couldn’t do this alone. Friends, family, and the company of 50,000 people were touched by their story and raised $2.3M to save Lucy.
  • After years of struggling to get pregnant, Mark and Lana were over the moon to welcome baby Kaysen into the world. However as time went on, Lana and Mark were starting to notice that Kaysen wasn’t quite hitting all the milestones that babies his age should. Just like Lucy, Kaysen was diagnosed with SMA Type 1 and as Mark and Lana describe they set on “the biggest emotional journey of our lives.” The family has made pleas to the Alberta government for access, while their Edmonton community has helped the family raise over $1 Million for Kaysen.

Charities

Funding research is critical in order to find a cure as well as make treatment options more effective and accessible. If you are looking for a Canadian charity to donate, ‘Cure SMA,’ is a registered charity,  founded by a small group of caring Canadian parents who were driven to fund Canadian SMA research. Their mission is to provide direct family support in addition to funding Canadian research projects.

US and Global SMA Charities:

Fundraise for SMA

Help a Canadian baby fight SMA and gain access to life-saving treatment by starting a fundraiser for a child’s family. You can also make a difference today and start a charity fundraiser for a certified SMA charity. Donations are automatically delivered to the charity and donors receive tax receipts, making it a simple and effective way to raise money for Spinal Muscular Atrophy in Canada.

Help those affected by SMA today

These families are on the most emotional journey of their lives. Help bring hope and aid to the families fighting for a cure, fighting to afford a life-saving drug, and fighting for their child. You can make a difference today and rally your community by starting a fundraiser for someone in need.

Start an SMA fundraiser