How Our Cure SMA Community is Raising Awareness

Spinal muscular atrophy is the number one genetic cause of death for infants, and 1 in 50 people carry the genetic mutation that causes SMA. But even so, many people are not familiar with SMA. Thanks to our community, that is changing.

Melissa Joan Hart recently posted about SMA awareness on her Instagram and Twitter accounts. WPTV in Florida did a story on the Myers family and their participation in the #SMAshSMA campaign. Several others have joined in to take the #SMAshSMA challenge.

The Myers family also joined with the Kulas family and the Miller-Smith family to spearhead outreach to actor Stephen Amell. Cure SMA community members Alyssa Silva and Diane Blair were featured on The Mighty Site. And these are just a few of the exciting developments we’ve seen.

All these great awareness activities started with an idea right from our community! Melissa Joan Hart was contacted by Mary Kate Venedam. Working in memory of her cousin, Erin Trainor, Mary Kate reached out to Melissa Joan Hart and other celebrities to help raise awareness of SMA. The #SMAshSMA campaign was created by six-year-old Bailey Bucher.

Expanding Our Community

The initiative and authenticity of our community is what makes these appeals so powerful. It’s also part of what we envisioned when we changed our name from Families of SMA to Cure SMA last year.

We chose the name Cure SMA because it reflects our vision of a treatment and cure for SMA, and because it allows us to broaden our community to anyone who shares that goal. Families were, are, and always will be at the heart of what we do. And we need to attract even more people to be a part of our work so that we can accelerate momentum toward a treatment and cure.

Want to get more involved or have an idea for an awareness activity or event? Send us an email at [email protected] and we’ll be in touch with information about the resources and support we can offer.

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