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Cure the Gene for Piper Jean

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Piper Jean and I are headed to New York City, November 3rd!  I have a long 26.2 miles to run that weekend, but Piper has a longer and much tougher road ahead. Piper is a little girl who attends my daycare. Piper has been diagnosed with Mulitsystemic Smooth Muscle Dysfunction Syndrome. (MSMDS).  This is a disorder that puts her at high risk for childhood strokes, aneurysms, seizures and bladder  complications.  It is a spontaneous gene mutation that needs our assistance to help find a cure.  On that weekend, Piper will be attending a fundraiser in New York to honor the memory of another little girl who suffered from this disorder.  This fundraiser goes to help fight MSMDS and assist in research to finding a cure.  At this time there is very little funds and research available due to the rarity of this disorder.  The same weekend that Piper is at the fundraiser, I will be running the New York City Marathon to raise awareness.   Piper will present a check at the Love for Livie Legacy Benefit in NYC.  We are asking donations for this and Piper's future medical expenses.  FYI: Amanda (Morris) Ewertz is the mother and  beneficiary on behalf of  Piper.      

To read more about Piper's journey, you can click on this link:

https://piperspuzzle.wordpress.com/2018/07/12/the-journey-begins/
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Donations 

  • Stephanie Tharman
    • $100 
    • 5 yrs
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Organizer and beneficiary

Susan Brake
Organizer
Salina, KS
Amanda Ewertz
Beneficiary

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