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PHACE Syndrome conference brings together families, researchers

It looks like a birthmark, but is anything but. PHACE Syndrome is the association of large hemangionoma, commonly referred to as “strawberry marks,” which usually are found on the face or neck in combination with one or more other abnormalities. It’s a relatively new disorder, first diagnosed by name in 1996, and Children’s Wisconsin is at the forefront of fighting it.

On June 19 and 20, Children’s is a host at the International PHACE Syndrome Conference. Families, physicians and researchers from around the United States will converge at Country Springs Hotel, 2810 Golf Road in Pewaukee, to share information and hear the latest developments.

Children’s is proud to partner with PHACE Syndrome Community to research and find a cause and cure for PHACE Syndrome. Patients in our Birthmarks and Vascular Anomalies Program are evaluated and treated by a collaborative team of specialists from many disciplines: dermatology, radiology, cardiology, neuroradiology, neurosurgery, ophthalmology, genetics, plastic surgery, otolaryngology and more. It’s a team that works together for your child — and for you.

Raising awareness is key

While hemangiomas are common, affecting up to 10 percent of children, PHACE Syndrome is rare, only occurring in 1 out of every 20,000. Raising awareness is key, as many children could go undiagnosed. There also have been many adults now being diagnosed due to complications such as migraines.

One such family fighting to get the word out is the Lauffers, who travel to Children’s Wisconsin from the Pittsburgh area to seek PHACE treatment for their 2-year-old daughter, Lily.

This spring, Jerri and Jason Lauffer organized The Race for PHACE, a 5K walk/run to raise awareness and support for PHACE families. They drummed up over 300 participants and raised $12,000 for the PHACE Syndrome Community. They plan to make the race an annual event.

Jerri recalls her first contact with Children’s Wisconsin, and how it convinced her that making the 11-hour drive would be worth it.

“I made a call to the Vascular Anomalies Center, talked to a nurse there, and learned more in an hour from talking to her than I had learned in six months,” Jerri said.  “It’s nice to go somewhere where we can get answers.”