About Us
Giving everyone with SMA the same opportunities as anyone else.
SOAR empowers individuals with Spinal Muscular Atrophy (SMA) by addressing unmet financial needs and fostering inclusive, supportive environments. We are committed to challenging misconceptions, promoting awareness, and providing meaningful support so that those with SMA can embrace their uniqueness and strengthen their sense of independence.
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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. The challenges for him and those with his condition are vast, but through SOAR, Justin's brother and a team of dedicated individuals strive to transform the support that these individuals receive.
Financial Support
Justin's treatment was significantly delayed, but there are others that will never able to receive it. In underprivileged communities around the world, it is nearly impossible to afford the expensive therapies that slow disease progression for SMA. The wages of the average family are simply not enough without health insurance. Zolgensma, for instance, the only one-time injection for SMA currently available, costs over $2 million dollars. Other care supplies from diapers to specialized food, place additional strains on a family's finances. SOAR is focused on giving as much help as possible to these children through partnering with SMA Vietnam, a patient group consisting of families impacted by SMA.
Social Support
Stigma and misunderstandings about SMA make it harder for individuals with the condition to feel safe and supported in their everyday environments. For instance, the misconception that SMA has a negative impact on intelligence makes many feel that they are being talked down to instead of being treated as an equal. The physical limitations of the condition create additional social barriers for these people to connect with their peers. To create spaces where those with SMA are understood, SOAR spreads awareness about SMA and the realities of the condition through its social media channels. Further, it currently directs SMA Support Mates, an online program to connect those with SMA to their peers and empathetic mentors who have experience with the condition.
