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HeroUp

  • Zorinsky Lake Park 3808 South 154th Street Omaha, NE, 68144 United States (map)

More than 100 Jansen’s Warriors donned their capes to “Hero Up for Jansen’s” at the Jansen’s Foundation’s first-ever walkathon on Saturday, July 29, 2017, at Zorinsky Lake Park. The walkathon, which helped raise funds for a cure and increase awareness of this ultra-rare disease, proved to be a fun-filled day for all those who attended.

There are only five people in America diagnosed with Jansen’s and they came together for the first time for this inspiring event. Michel Straley, 22, the only other adult living in the U.S. with Jansen’s, traveled to Omaha from St. Louis with her fiancé, Andrew Hardy.

Left to right: Jahan Adam (6), Arshaan Adam (9), Levi Krystosek (11), Michel Straley (22), and Neena Nizar (39). The only 5 genetically confirmed Jansen's Warriors in America meet for the first time.

 
 

Eleven-year-old Levi flew to Nebraska all the way from Mississippi and spent the week with his buddies, Arshaan and Jahan.

 
 

The walk featured a super-hero photo booth by Emerald Mae Photography, and participants were surprised with a visit from Batman and Robin!

https://www.emeraldmae.com/hero-up-for-jansens-72917/

The Flapjack Guys served up scrumptious pancakes and HETRA brought two miniature ponies for the children.

The Nebraska Marathon was amongst the many groups and businesses that supported “Hero Up for Jansen’s.”

It was a wonderful event with the community emerging as the true hero of the hour!

A precious moment, indeed.

To visit the "HeroUp" Picture Gallery, click here

Sponsors

 
Earlier Event: May 9
The World Orphan Drug Congress
Later Event: November 7
Jansen's On TLC/Discovery channel