Chesterton Tribune

 

 

'Running for Alexandria' a 5k run/walk, January 29

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A fundraiser, “Running for Alexandria 5k Run/Walk,” formerly the Frozen Feet 5k, will be held on January 29, in the Town of Porter to help meet medical expenses of Alexandria Tamara Ellis.

On July 1, the Ellis family received news a parent should never have to receive. Alexandria was diagnosed with a terminal disease called Spinal Muscular Atrophy - Type 1. This genetic disease is one of the most common among rare neurological diseases for children and the number one cause of death for children under the age of two. Alexandria has already lost the ability to eat and breathe, requiring mechanical support to keep her alive. On November 3, 2016, Alexandria was the first in her age group to be allowed into an expanded access program to receive the first ever treatment for SMA.

The first 75 preregistered runners and walkers will be guaranteed a t-shirt. Those after the first 75 will receive a winter beanie hat.

The course will be on pavement on the streets of Porter. This is the first race of the 2017 Crazy Legs Race Series. More info about the series can be found at www.crazylegsraceseries.info

Please join in to help raise awareness and support for Alexandria and Spinal Muscular Atrophy. All proceeds will go towards the mounting medical and equipment costs Alexandria will incur as they await the results of the newly developed drug, Nusinersen.

Sign up online at https://raceroster.com/events/2017/11064/running-for-alexandria-5k-runwalk

For more information or to volunteer please contact Paul Stofko at stofko121@yahoo.com

 

 

Posted 12/28/2016

 
 
 
 

 

 

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