Cure GM1 2017 Run/Walk Winner

Congratulations to all those who participated in the Cure GM1 Run/Walk and to Team Iris who took first place with the stats listed below!  Read on to learn more about Iris and her supporters and team.

Team Name # Tshirts $ Donations # Miles # Pics Total Points
TeamIris 14 $ 24826.00 380 36 5034

 

About Iris

Iris lives in Northern California and her family founded the Cure GM1 Foundation in April 2015.  Iris was diagnosed at age 5.5 with GM1 Gangliosidosis Type 2/Juvenile  and she is now 9 years old.

Iris has the best smile as observed by those who follow her Facebook page.  She loves people, horseback riding, swimming, princesses, and movies.

Iris was misdiagnosed twice.  The first misdiagnosis was being told nothing was wrong.  The second misdiagnosis was being told she has cerebral palsy.

In the summer of 2013, Iris was properly diagnosed in a tiny private suburban neurology practice using an enzyme level test.  Her diagnosis was also verified and confirmed by Stanford University through DNA analysis.

Her family fights every day to maintain her health and quality of life in the face of GM1 Gangliosidosis, an truly devastating disease.

About Team Iris

Carrie and Chris Keeling

Reside in Cyprus and are very old friends of Iris’ family.  They ran and swam over the course of the challenge.

Will Waggoner

One of Iris’ most ardent supporters, her uncle

Kimberly Jorgenson Adams

A very kind friend whose daughter attended preschool with Iris.  This is Iris’ preschool graduation picture from 2013 taken when she was first diagnosed.

The Fong Family

Wonderfully kind, long-time supporters of Sweet Iris who first learned of Iris’ story through one of her video campaigns.

Karen Posti

A very old friend who is also Iris’ Runner in the IRun4 program

Iris’ Family

Iris’ biggest supporters of all!  Her family!

Thank you so much to all those who participated!  Your generosity and help raising awareness are deeply appreciated.  Please continue to help advance the mission of the Cure GM1 Foundation to help support bringing treatments to all those who suffer from GM1 Gangliosidosis.

Cure GM1 2017 Run/Walk Winner

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