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About Us

Giving everyone with SMA the same opportunities as anyone else.

We support individuals with Spinal Muscular Atrophy by spreading its awareness, giving them valuable resources for their health, and collecting funds for organizations invested in finding its cure. SOAR is currently working to initiate a toy drive for underprivilged children in the SMA community.

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Our Story

Justin was born just a year before the first drug for the treatment of SMA was being tested. After months of desperate and determined pleading from his parents, he was finally admitted into the trial. It was only until after it was completed that they learned he had been in the control group, where no drug had actually been administered. At the age of 3, he finally got treatment, but by then, the damage was irreversible. Justin has grown up without the ability to walk, or even sit up, despite the help of the medication given to him. Therapies for SMA, while effective, still need far more support to truly cure the disease. Created by his brother and a team of dedicated individuals, SOAR strives to help turn this vision into a reality.

While Justin wasn’t able to get his treatment early, he was still extremely fortunate to have access to all the healthcare benefits that helped to stop the progression of his disease. Others, especially in third-world countries, don’t have that chance at all. With no way to afford the expensive drug, families must watch as their children slowly lose their mobility, and potentially their lives, from SMA. That's why SOAR is focusing on giving as much as help as possible to these kids. In addition to helping those in the community, we have also partnered with SMA Vietnam, a patient group consisting of families and their SMA children, to send gifts that will both enrich and ease their lives.

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Meet The Team

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