Organización Sin Fin de Lucro

SMA Outreach and Awareness Resource

Chantilly, VA
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www.sma-awareness.com/

  • Misión

    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 organization is a high school-led nonprofit founded by the brother of an individual with Spinal Muscular Atrophy (SMA), named Justin. Witnessing firsthand the many challenges that come with living with SMA, even with access to strong medical and emotional support, he recognized that many others face these obstacles without the same resources. Determined to make a difference, he brought together a dedicated team of high school student leaders to form a platform that supports the SMA community on multiple fronts.

    Together, we aim to improve the lives of individuals with SMA through both emotional and practical support. In partnership with SMA Vietnam, we’ve raised funds to support underserved individuals with SMA in Vietnam, where the higher value of the dollar allows donations to go further. In 2024, we funded Lunar New Year gifts for children with SMA in Vietnam, helping brighten their celebrations and reduce the financial burden of the holiday season on families.

    Beyond financial aid, we focus on emotional well-being through awareness campaigns and connection-based initiatives. Our 2024 SMA Awareness Month campaign reached over 200 people, sharing personal stories and interviews to build empathy and understanding. We are currently launching a buddy program, SMA Support Mates, to foster meaningful peer connections and provide emotional support for youth with SMA.

    Áreas de Impacto incluyen

    • Discapacidad
    • Derechos Humanos & Libertades Civiles
    • Voluntariado

    Información y Contacto

    • 5716261832
    • 42534 Lewiston Dr, Chantilly, Virginia, US
    Illustration

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