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.

“Hi. My name is Zane. My Mommy always told me I was a beautiful baby girl with big, brown eyes. I loved to smile. I was told it made people happy. I also loved to be held and be around others. My family and friends put on this event in Memory of me to help present- day children & families Fight SMA. I hope you will join the Fight. Thank you for supporting me, my family, and this charitable cause. Hugs from Heaven…”

Zane was diagnosed with the disease Spinal Muscular Atrophy (SMA) Type I when she was 6 weeks old. SMA is the leading genetic killer of infants. It is a terminal disease that results in the loss of nerves in the spinal cord & the weakness of the muscles connected with those nerves. SMA impacts the ability to walk, stand, sit, eat, breathe & even swallow. Typically, babies with SMA Type 1 have a life expectancy of 1 year. Constant monitoring & medical assistance is vital.

SMA is an inherited and often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing. Both parents have to be carriers of the SMA gene in order to have a child with SMA. Many people are unaware that they are carriers; Hillary & Keith did not know each of them carried the deadly gene. One in every 50 people carry the gene that causes SMA, which means there are more than six+ million carriers in the United States alone. Recently, in the winter of 2016, a huge milestone was reached: a treatment for SMA became available. Spinraza is a drug administered to patients with SMA to increase the SMN protein in which they are lacking. There is NO cure. Help is still needed. Genetic testing is available to determine if YOU carry the gene.

Since the time of Zane’s diagnosis, The Schmid Family has worked closely with Cure SMA. (www.curesma.org) The proceeds of this event will go towards purchasing medically necessary equipment needed for children with SMA, awareness materials, and funding events for the annual SMA conference.

Zane fought her disease bravely each day, but in the end, her tiny little body couldn’t fight anymore. She passed away peacefully in the arms of her parents surrounded by loved ones. She joined the Angels on June 18, 2009: she was 5 months & 16 days old.

…We miss our baby girl so much. At times, it’s hard to even comprehend we don’t have her with us. Our other children, Avery (Zane’s twin sister), and twin younger brothers, Brennen & Braxton, speak of Zane often. I have been asked before, “why do you do it (Zane’s Run)?” My response was simple….we do it because she is our daughter. Just as if she were here, we will take care of her everyday. It helps, especially me, to do this event. It’s therapeutic and I have to do something- I am her Mommy. I am not letting SMA get off scott- free from taking our child. I, we, are going to fight back and do our part. It may sound cliche, but if we can help make a small difference, take off one stress, to a newly diagnosed family and child, it’s all worthwhile. We were in that position once. I struggle to find the words to describe it.

‘…Nobody can do everything, but everyone can do something…’

We will. We are. Join us. It’s worth it.