• Spinraza Update

    Learn more about the first and only FDA approved drug to treat Spinal Muscular Atrophy. Continue reading

  • Register for The 9th Annual Zane’s Run

    The 9th Annual Zane’s Run will be held on Sunday, September 24, 2017 at Great Valley Middle School. Continue reading

  • What does SBZ buy with the event proceeds?

    If you are asking yourself, “how will my donation be used?” Read more for the answer… Continue reading

  • Consider Becoming a Sponsor

    The purpose of Zane’s Run is to spread awareness and raise money to support families with children who have been diagnosed with SMA. Please consider sponsoring this event.

  • In Memory of Zane

    Zane’s Run was started in 2009 in memory of Zane Schmid, the beautiful baby girl of Keith and Hillary Schmid.  Pictured with Keith and Hillary are Zane’s twin sister, Avery, and younger brothers, Brennen and Braxton.

Spinraza Update

In December 2016, Cure SMA announced to the SMA community some pretty incredible and hopeful words…”There is now a treatment for SMA.” Spinraza is the first and only FDA approved drug used to treat patients with Spinal Muscular Atrophy. Since patients with SMA lack or have very little of the survival motor neuron (SMN) protein, Spinraza replaces the missing protein. It is administered via intrathecal injection, which delivers therapies directly to the cerebrospinal fluid (CSF) around the spinal cord, where motor neurons degenerate in patients with SMA due to insufficient levels of SMN protein. It is delivered in doses over a period of time.

Learn More:

http://www.curesma.org/

https://www.spinraza.com/en_us/home/about-spinraza.html

http://www.curesma.org/news/spinraza-approved.html