Treatments for SMA

There are now two approved treatments for spinal muscular atrophy… Continue reading →
Register for the 11th Annual Zane’s Run

The 11th Annual Zane’s Run will be held on Sunday, September 29, 2019 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.

Treatments for SMA

Thanks to the dedication of our community and the ingenuity of our researchers, we now have multiple approved treatments that target the underlying genetics of SMA. But our work is not done. We know what we need to do to develop and deliver effective therapies. And we’re on the verge of further breakthroughs that will continue to change the course of SMA for everyone affected—from infants to adults—and eventually lead to a cure.

On December 23, 2016, the FDA announced that it had approved Spinraza, a treatment developed by Biogen and Ionis, making it the first-ever approved therapy for SMA. Cure SMA provided the very first research funding for this program beginning in 2003.

On May 24, 2019, the FDA announced that it had approved Zolgensma, a one-time intravenous (IV) gene therapy, to treat SMA. Zolgensma is approved for patients with all types and forms of SMA who are under two years of age at the time of dosing. Cure SMA supported this program with a series of grants to Nationwide Children’s Hospital, beginning in 2010.