Cure the Gene for Piper Jean
Donation protected
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/
To read more about Piper's journey, you can click on this link:
https://piperspuzzle.wordpress.com/2018/07/12/the-journey-begins/
Organizer and beneficiary
Susan Brake
Organizer
Salina, KS
Amanda Ewertz
Beneficiary