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welcome to jakejordan.org

Jachin, who lives in Madison, WI, is the son of Jon and Ellen Jordan. He was born in June of 2007 with Sturge-Weber syndrome as well as Klippel-Truenany. He came into this world with a port-wine stain birthmark covering 70% of his body, including his entire face. At two days he was diagnosed with glaucoma in both eyes and at 10 weeks he experienced his first of many seizures due to the birthmark being in the right hemisphere of his brain. He is such a strong little boy and is a great blessing to all who know him, but he faces an uphill battle. Please help us to raise support for the Sturge-Weber Foundation so important clinical trials can get funding to try to cure this debilitating disorder.

2010 Outing Announced!

The 2010 outing will be held Monday May 17 2010 at Bishops Bay Country Club in Middleton, WI. Download the brochure PDF or read more info on the Jachin Jordan Golf Outing benefitting The Sturge-Weber Foundation page.

Jake's story picked up on NBC 15 (Madison)

Last year, NBC 15 ran a wonderful story on the 10:00 news. Click here for the story and video...