by Joseph Back

August is dedicated to raising awareness of Spinal Muscular Atrophy, or SMA. Given that background, a local group of family and friends called Team Aubree is calling public attention to the disease that took their loved one far too soon, along with efforts to defeat SMA.

“Aubree LeTendre was a sassy girl,” Aubree’s aunt Kayla Weltzin shared of the namesake for Team Aubree, a local SMA fundraising and awareness organization. “Life threw her curveballs that she couldn’t overcome.” Diagnosed at 8 months with SMA, Aubree would not survive the genetically determined disease that causes progressive loss of muscle tone and generally ending in death, though a form with young adult onset allows for a normal lifespan. Aubree LeTendre would spend just under a month at the Children’s Hospital in Milwaukee and two more years in and out of hospital before passing in February 2019.

In her short time on earth, Aubree nonetheless made quite an impression on those around her, and Team Aubree is dedicated to raising money for SMA awareness along with donations to organizations such as the Muscular Distrophy Association (MDA), Ronald Mc-Donald House, Children’s Hospital of Wisconsin, “and families in situations similar to Aubree,” Weltzin said. Among the ways that Team Aubree is through its annual fundraiser, held at the Cannery this year and raising $4,300 to distribute to the various organizations.

“The thrift sale went beyond the group’s expectations,” Weltzin said of the third annual event, with all items donated by family and friends of the group. “The generosity of so many has made this thrift sale grow and grow each year. We started this thrift sale to help out the facilities that helped Aubree and her family,” she said. Weltzin had more to add in terms of details on Spinal Muscular Atrophy and efforts to fight it, including the following: •1 in 40 people unknowingly carry the SMA gene

•1 in every 6,000 babies are born with SMA

•There are 4 different types of SMA In addition, since Aubree’s passing two new drugs, Zolgensma and Evrysdi, have been approved to help treat the disease. A drug approved prior to Aubree’s passing named Spinraza helps those suffering from SMA to keep what muscle tone they do have, and “almost every state” requires newborns to be screened for the gene mutation that causes SMA.

“During her short time here on earth she showed us how to fight for everything and to look at life in a different perspective,” Weltzin said of her niece. “We made it so that even though she had SMA, she got to do what other kids her age were doing just in a different capacity.”

Those interested in learning more can do so at the public Facebook group “Team Aubree.”