On July 1st, the Ellis family received news a parent should never receive. Alexandria Tamara Ellis was diagnosed with a terminal disease called Spinal Muscular Atrophy - Type 1. This genetic disease is one of the most common rare neurological diseases for children and the number one cause of death for children under the age of two.Alexandriahas already lost the ability to eat and breathe, requiring mechanical support to keep her alive. On November 3rd, 2016,Alexandriawas the first in her age group to be allowed into an expanded access program to receive the first ever treatment for SMA.
Running for Alexandria 5k Run/Walk formerly the Frozen Feet 5k will be held on January 29th in the Town of Porter. The first 75 Preregistered runners and walkers will be guaranteed a t-shirt after that they will receive a winter beanie hat. Course will be on pavement on the streets of the Town of Porter. This is the first race of the Crazy Legs Race Series more info about the series can be found at www.crazylegsraceseries.info
Please help us raise awareness and support for Alexandria and Spinal Muscular Atrophy. All proceeds will go towards the mounting medical and equipment costsAlexandria will incur as they await the results of the newly developed drug, Nusinersen.
December 1 10:51 AM CST - sign up live