4th Annual Virtual Zebra Run for Rare Disease (5k) 2021

Short review

The United MSD Foundation is pleased to announce our Zebra Run Virtual 5k, held in conjunction with the 4th Annual Zebra Run for Rare Disease, a 5K Race and 1-Mile Fun Run scheduled for Saturday, April 17, 2021. The race will be the first year of a hybrid event - an in-person event at Fort Maurepas Park in Ocean Springs, MS and virtual across the country- and world!  The Zebra Run benefits the United MSD Foundation and raises money for research to cure Multiple Sulfatase Deficiency.  

Participation is simple! Simply run, walk or bike with us on April 17th, 2021 from wherever you are! Be sure to send us your pics and tag us on social media with #ZebraRun21. 

Virtual runners registered under swag option will receive a t-shirt, race medal and printable bib.  If there are any questions, please contact mdouglas@unitedmsdfoundation.org. 

 

About Multiple Sulfatase Deficiency:

Multiple Sulfatase Deficiency (MSD) is a rare and fatal disease that affects children. With MSD, the body does not break down and filter out the natural cellular waste that occurs in everyday cell functions. Children are typically without any symptoms at birth, but depending on their genetic mutation, signs of MSD can begin either soon after children are born or later on in the child’s life. Diagnosis of the disease is very difficult, as there are less than 100 known cases of MSD throughout the world, and there are approximately 20 known cases in the United States. Children are often initially diagnosed with developmental delay and frequent ear infections before receiving a diagnosis of MSD.  Children with MSD rarely survive past their 10th birthday, as their entire body shuts down due to a buildup of waste and loss of critical function.

 

About United MSD Foundation: 

The United MSD Foundation is a 501(c)3 non-profit organization dedicated to finding and funding a cure for Multiple Sulfatase Deficiency, a rare and fatal genetic disease that affects children. Through relentless pursuit of critical lifesaving research and treatment, we aspire for all children with MSD to live a healthy life without limitations. Learn more at www.CureMSD.org. 

 

The zebra has become the unofficial mascot of the rare disease community, as physicians are typically taught that when diagnosing patients, they should look for more common diseases first; “Look for horses, not zebras.”  Our children are zebras.  Through the Zebra Run, we hope to not only raise money to FUND THE CURE for MSD, but moreover, to raise awareness of the entire rare disease community.