• Spinraza Update

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

  • Register for The 10th Annual Zane’s Run

    The 10th Annual Zane’s Run will be held on Sunday, September 30, 2018 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.  Many medically adaptive pieces of equipment are purchased and immediately sent out to families when they call Cure SMA.  This takes the frustration away from dealing with insurance companies and erases the financial burden for families.  Here’s a breakdown of what is purchased and how much each piece costs.  

Panthera Bambino- $2,817:  adaptive wheelchair
Panthera Micro-$2,722:  adaptive wheelchair
 
Leckey Bath Chair Size 1 (includes all straps and accessories)- $551.40
Leckey Bath Chair Size 2 (includes all straps and accessories)- $554.40
Leckey Bath Chair Size 3 (includes all straps and accessories)- $586.80
Leckey Bath Chair Size 4 (includes all straps and accessories)- $596.40
 
EZ On Vest- $125: a specialized harness that is used to strap toddlers into the car. 
 
Due to the fact that children with Type zero/ I  SMA have to lay flat to help take the pressure off their diaphragm & lungs in order to breathe easier, Sweet Baby Zane purchases two adaptive pieces of equipment for safe transportation:
 
Cosco Dreamride Car Bed- $100:  allows infants to lay flat, fits up to 26 inches 
 
Hope Car Bed- $975:  allows infants/ toddlers to lay flat, fits up to 31 inches- Pictured below…
 

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)