• 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.

What does SBZ buy with the event proceeds?

If you are asking yourself, “how will my donation be used?” Here’s the answer-

Due to the fact that children with Type I SMA have to lay flat to help take the pressure off their diaphragm & lungs in order to breathe easier, Sweet Baby Zane purchases:

  1. Cosco Dream Ride Car Beds- allows infants to lay flat, fits up to 26 inches (Approximately $100/each)
  2. Hope Car Beds- allows infants/ toddlers to lay flat, fits up to 31 inches (Approximately $975/ each)
  3. EZ- on Vests- a specialized harness that is used to strap toddlers into the car (Approximately $125/each)

carbed2

Our country is fortunate to live in a society with great medical care & a knowledgeable medical community in various areas of health. However, there are many countries where the medical community and families have no knowledge of SMA. Sweet Baby Zane funds International Information CD’s. The CD’s are translated in the native language of the family and mailed to the addressee. ($6/each)

The annual CureSMA Conference is the largest SMA conference in the world.  Through the conference, researchers, healthcare professionals, and families are brought together to network, learn, and collaborate. The family conference includes a variety of workshops, keynote sessions with leading researchers, and a family friendly research poster session.   There are also fun events like the dance party, pajama party and movie night.  We are happy to sponsor this wonderful event!